The Ethics Committee has approved these data integration projects.
The assessment process for each project included a comprehensive assessment of any impact on individuals’ privacy.
Historically and in recent years, an ever increasing number of individuals have immigrated to Australia. Some of these individuals have come from countries where there has been a high incidence of tuberculosis.
To mitigate the risk of tuberculosis importation into Australia, the Department of Home Affairs has used various diagnostic screening tools such as chest radiographs to identify immigrants with active symptoms. Despite the widespread use of chest radiographs, they are unable to detect latent symptoms.
This study examines the effectiveness of existing screening policies and practices in the detection of tuberculosis among individuals entering Australia.
Specific aims include:
The study cohort will be drawn from the Department of Home Affairs’ Integrated Client Service Environment and Immigration Records Information System databases from 1 January 2014 onwards.
The study cohort will be linked to state and territory health datasets.
Study findings will contribute to improved tuberculosis screening among immigrants entering Australia.
Despite the widespread use of implantable cardiovascular defibrillators—battery-operated devices implanted under the skin which send electrical impulses to the heart—to treat patients with severe cardiovascular disease, little is known about their effectiveness.
This study investigates survival outcomes among patients with implantable cardiovascular defibrillators.
The study cohort will consist of cardiomyopathy patients who received an implantable cardiovascular defibrillator in the Australian Capital Territory between 1 January 2005 and 31 March 2019.
Data will be linked to the National Death Index.
Clinicians can use study findings to maximise survival outcomes among patients with implantable cardiovascular defibrillators.
This study examines patterns of healthcare use and survival outcomes among patients in Australia with either diabetes or kidney disease.
The study cohort will be drawn from the National Diabetes Services Scheme and the Australia and New Zealand Dialysis and Transplant Register.
Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings can be used to monitor the burden of disease associated with diabetes and kidney disease, enabling healthcare professionals to enhance the care of patients with either diabetes or kidney disease.
This study investigates the unique needs posed by individuals with a disability within the criminal justice system.
The study cohort will consist of individuals aged 10 years and over at or after 1 July 2009 in NSW who also meet the following criteria:
This study will also include two comparator groups:
Study cohort data will be drawn from the following datasets:
The study cohort and the comparator groups will be linked to the following datasets:
Study findings will contribute much-needed information about the unique needs posed by individuals with a disability within the criminal justice system. Policymakers can use this information to develop policies and targeted interventions.
In this project, study investigators will use statistical modelling to predict health outcomes among head and neck cancer patients. The modelling will include patient demographics, co-morbidities, tumour characteristics and treatment information.
The study cohort consists of approximately 15,000 adult patients who presented to and/or received treatment at several participating NSW Cancer Centres between 1 January 2000 and 31 December 2017.
Findings from this study will inform healthcare policies and practices designed to improve the care of head and neck cancer patients.
This study, a refreshed application of a previous project (EO2015/4/192), investigates the effectiveness of primary care services on health outcomes among patients with a range of chronic medical conditions.
Specific study objectives include:
A study cohort, drawn from the Medicare Consumer Directory (also known as the Medicare Enrolment File), will be linked to the following datasets:
Healthcare professionals can use study findings to improve quality of life among patients with chronic medical conditions.
This study aims to establish an enduring linked cancer and treatment analysis asset (Cat-Link AA) to inform cancer-based epidemiological research.
The study cohort will consist of individuals diagnosed with cancer from 1 January 1982 onwards (data will be drawn from the Australian Cancer Database). The study cohort will be linked to the following datasets:
Cat-Link will be used to investigate numerous research questions and hypotheses over time in relation to the health services used by, and medications prescribed to, people diagnosed with cancer, and their outcomes. Some examples of the types of research questions that will be addressed include:
Further phases of this project are planned to include the addition of other relevant datasets and the development of arrangements to enable access by a wider range of analysts.
The purpose of this study is to examine the treatment of, management of and outcomes for patients with ST-segment Elevation Myocardial Infarction (STEMI).
A study cohort will be drawn from a Qld hospital cardiac database. This cohort will be linked to the National Death Index to identify deceased patients and their cause(s) of death.
Healthcare professionals can use study findings to develop best-practice care models for patients with cardiovascular disease.
Historically, surgeons have treated coronary artery disease using bypass grafting, a less invasive technique than conventional surgery. Despite the widespread use of this medical procedure, limited data exists about its long-term outcomes.
This project will examine the long-term effectiveness of bypass grafting in the treatment of coronary artery disease and identify the characteristics of the target group for whom this procedure can be performed.
The study cohort consists of approximately 300 patients who underwent minimally invasive coronary artery bypass grafting between 1997 and 2019. This cohort will be linked to the National Death Index.
Study findings will provide much-needed information about the long-term effectiveness of coronary artery bypass grafting.
This project involves the acquisition, integration, transfer and analysis of data to support the Independent Review of Historical Suicides for the National Commissioner for Defence and Veteran Suicide Prevention. The Review conducted by the AIHW and Australian Commission on Safety and Quality in Health Care will consider risk and protective factors for suicide, including military service and veterans’ post service experience.
The study will compare the health and welfare characteristics of current, ex-serving and Reserve members of the Australian Defence Force (ADF) who died by suicide between 2001 and 2018 with (a) current, ex-serving and Reserve members who did not die by suicide, and (b) people in the whole Australian population who died by suicide.
Two separate linked datasets will be created: Dataset 1 and Dataset 2.
Dataset 1
The study cohort of ex-serving members, and current and reservist ADF members not known by Defence to be alive will be linked to the following datasets:
Dataset 2
The linked Veterans-hospital-MBS-PBS dataset will include:
The analysis will investigate whether there are any protective and/or risk factors that are unique to the Veteran population, which could identify opportunities to focus prevention strategies and ensure a proactive, safety-focused culture.
The Review outcomes will enable targeted policies and interventions to be developed to improve the health and welfare of, and contribute to suicide prevention among, current serving, Reserve and ex-serving ADF personnel.
The Bipolar At-Risk Prospective Study (BARPS), a longitudinal study, investigated risk factors for the onset and maintenance of bipolar disorder. Study investigators followed-up a cohort recruited between 2008 and 2011. Findings contributed to the development of assessment criteria to improve the identification of individuals at risk of bipolar disorder.
This follow-up study will evaluate the validity of these assessment criteria and examine the longer-term outcomes for the group.
The original BARPS cohort will be linked to the National Death Index to identify deceased patients so that they can be excluded from follow-up assessment.
Study findings will aid healthcare professionals in the detection of bipolar disorder and in the management of individuals afflicted by this debilitating mental illness.
The Royal Commission into Aged Care Quality and Safety raised concerns about the use certain psychotropic medications prescribed for sedation of residents in Commonwealth subsidised residential aged care services. Since July 2019, approved residential aged care service providers have had legislative responsibilities relating to the use of physical and chemical restraint under Part 4A of the Quality of Care Principles 2014 (the Principles).
On 22 November 2019, further amendments to the Principles included a requirement to undertake a Review of the regulatory arrangements. This Department of Health funded project will address Review requirements for evaluating the effectiveness of the Principles in minimising the use of chemical restraint, with physical restraint changes considered separately.
The study cohort, drawn from the National Aged Care Data Clearing House, will consist of all permanent residents who received Commonwealth aged care subsidies between June 2017 and March 2020, and who were dispensed key medications (e.g. antipsychotics and benzodiazepines), before and after the amendments to the Quality of Care Principles.
The cohort will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.
As part of the legislated review, this project will provide evidence to inform possible refinements of the regulatory arrangements relating to the use of chemical restraint within Commonwealth subsidised residential aged care services.
This study investigates the outcomes of children placed in out-of-home care (OOHC). Specifically, this study examines the following areas:
The NSW Department of Communities and Justice will prepare a study cohort consisting of OOHC cases and comparators. OOHC cases will consist of children aged between 0 and 17 years, placed into OOHC, under the supervision of NSW Department of Communities and Justice between May 2010 and October 2011. Comparators will consist of OOHC children who were returned to their parents.
Data will be linked to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will guide and inform child welfare policies. Findings will also contribute to an evidence-base designed to optimise the health and welfare of children placed in OOHC.
Periodic imaging is usually effective at detecting melanoma. Unfortunately, periodic imaging can inadvertently increase cancer risk due to increased radiation exposure. Furthermore, it can also increase the risk of over-diagnosis by detecting suspected tumours that are actually non-malignant. In addition, imaging also places a substantial financial burden on the healthcare system, particularly when suspected tumours turn out to be benign.
This study investigates the accuracy of periodic imaging in the early detection of melanoma.
A study cohort, consisting of asymptomatic melanoma patients who underwent surgery and who either attended annual imaging, at the Melanoma Institute Australia, between 01 January 2000 and 31 August 2017, will be drawn from the Melanoma Research Database. Study investigators will compare melanoma symptoms between patients who attended annual imaging and those who did not.
Data will be linked to the National Death Index to establish survival rates and to identify deceased individuals where melanoma was the primary cause of death.
Study findings will inform an evidence base guiding decisions about diagnostic imaging among melanoma patients and those at risk of developing melanoma.
Motor neurone disease (MND) is a terminal disease, affecting approximately one in four Australians. The condition is quite debilitating, adversely affecting an individual’s capacity to meet essential daily activities. MND patients thus display a number of complex needs and require ongoing care and support. Meeting these complex needs, unfortunately, places substantial emotional and, in particular, financial demands on households.
Although there is no cure for MND, riluzole, a pharmaceutical intervention, has displayed some effectiveness at slowing down the progression of this neurological condition.
This study examines patterns of healthcare use among MND patients, before and after diagnosis.
The AIHW will prepare a study cohort by drawing individuals from the National Death Index with an MND-related cause of death, and individuals from the Pharmaceutical Benefits Scheme with a riluzole dispensary. The AIHW will also prepare a comparison group, drawn from the Medicare Enrolment File and matched to the study cohort by age and sex.
The study cohort and the comparison group will be linked to the Medicare Benefits Schedule to identify health service use, and to the Pharmaceutical Benefits Scheme to identify patterns if medication use.
Study findings will assist medical researchers and healthcare professionals to improve the care and management of MND patients.
Pulmonary valve replacement (PVR) is a common procedure among adult patients with congenital heart disease. Historically, donated human pulmonary valves (allografts) were used to replace a patient’s own pulmonary valve. However, these grafts calcify over time. To overcome this, bioprostheses, such as the porcine Medtronic Freestyle heart valve, have been developed. This particular bioprosthesis has been linked to reduced symptoms of heart failure.
This study compares long-term outcomes between congenital heart disease patients who underwent a Medtronic Freestyle valve insertion versus those who received a pulmonary allograft valve.
Study findings will inform treatment approaches for patients with congenital heart disease.
The Women’s Healthy Ageing Project (WHAP) is a longitudinal study of the health and well-being of Australian women from middle age onwards. The WHAP began in 1991, with baseline participants now 70 years or older.
In 2016, the WHAP cohort was linked to the National Death Index to identify deceased study participants and their cause(s) of death.
To further expand the coverage of the WHAP, this study investigates patterns of healthcare and medication use.
WHAP data will be linked to the National Death Index, the Australian Cancer Database, the National Aged Care Data Clearinghouse, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Study findings will provide important information about patterns of healthcare and medication use among middle-aged and older Australian women, informing future health policies and treatment practices.
The Sixth Community Pharmacy Agreement (6CPA) is an initiative, developed by the Commonwealth Government, designed to expand existing community pharmacy programs. These programs aim to ensure that medication and other pharmaceutical interventions are available and accessible to disadvantaged groups in the community, improving patient care and health outcomes.
This study evaluates four community pharmacy programs funded under the 6CPA. Specific evaluation outcomes include medication adherence, healthcare resource use and cost effectiveness.
The study cohort will consist of any individual in a 6CPA program, who agreed to participate in the program between November 2018 and January 2019.
6CPA program data will be linked to the Medicare Enrolment File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme. Study findings will inform the development of future community pharmacy programs to further improve patient care and health outcomes.
The National Breast Cancer Foundation BreastScreen Demonstration Project, also known as the Lifepool project, is a collaboration between the National Breast Cancer Foundation, the Peter MacCallum Cancer Centre, the University of Melbourne, Melbourne Health and BreastScreen Victoria. It is a resource for research in the prevention and detection of breast cancer.
The aim of this study is to update the data in the Lifepool project by identifying deceased individuals and their cause(s) of death.
The Lifepool study cohort consists of approximately 54,000 women. Data will be linked to the National Death Index.
Study findings will enable healthcare professionals to update the Lifepool data, ensuring its accuracy and currency as a resource to inform future research in the areas of breast cancer and other important areas of women’s health.
The over-representation of Aboriginal and Torres Strait Islander people—particularly those with histories of youth justice supervision—in the judicial system and in the correctional system was highlighted by the 2016 Council of Australian Governments (COAG) Prison to Work report. A key recommendation was that Commonwealth and state/territory governments share de-identified criminal justice data to monitor the flow of individuals within all aspects of the justice system.
This study examines pathways through the justice system and the welfare system among individuals with histories of youth justice supervision. This study, in particular, will consider transitions from youth justice facilities to adult correctional facilities, including employment and education outcomes and welfare use after release from youth justice supervision or adult correctional facilities.
The AIHW will prepare a study cohort by drawing data from Juvenile Justice National Minimum Dataset. Data about patterns of welfare use will be drawn from the DOMINO dataset.
Study findings will inform welfare policy and improve the transition of young people and adults from the judicial system to the wider community.
Aneurysmal subarachnoid haemorrhage (aSAH) is a rare, yet devastating form of stroke. It is usually caused by a ruptured brain aneurysm. High rates of mortality have been linked to aSAH. Conversely, patients who manage to survive aSAH display high levels of disability, requiring extensive care and support, placing substantial financial burdens on households and the wider healthcare system.
Healthcare professionals can mitigate the disabling effects of aSAH, among survivors, through immediate access to specialist radiological, surgical and intensive care facilities.
The study has the following aims:
This study will be the first to examine delays in the provision of treatment for aSAH and to identify causes of these delays.
Study investigators will draw a cohort of approximately 800 patients with aSAH from Tasmanian and Victorian hospitals data.
Data will be linked to the National Death Index to identify all deceased patients and their cause(s) of death.
Study findings will inform hospital interventions, ultimately reducing treatment delays and enhancing aSAH patient quality of life.
Osteoarthritis is a degenerative joint condition affecting over two million Australians. Those with severe osteoarthritis, who are unresponsive to medication and conservative management, may benefit from total joint replacement surgery.
In the last 10 years, rates of total knee replacement surgery have increased significantly. This has placed substantial demands on the healthcare system. Furthermore, approximately 20 per cent of patients who undergo a total knee replacement do not benefit.
This study seeks to identify patients who are likely to benefit from total knee replacement surgery versus those who are unlikely to benefit.
The study cohort will consist of approximately 475,000 patients, drawn from multiple healthcare datasets.
Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Study findings will inform the development of prediction models. Healthcare professionals can use these models to identify patients with several osteoarthritis who are likely to benefit from a total knee replacement and those who are unlikely to benefit from this treatment.
In Australia, patients with rare medical conditions rely on medication to promote survival and maintain quality of life. These medications can be very costly to patients, their families and their carers.
To reduce the financial burden, the Commonwealth Government implemented the Life Saving Drugs Program (LSDP). Through this program, the Commonwealth Government fully subsidises the cost of life-saving medications for patients with rare diseases.
This study examines the effectiveness of the LSDP in facilitating survival and maintaining quality of life among patients with rare diseases.
The study cohort consists of patients who received LSDP-funded medications and who are known to be deceased.
A subset of the patient cohort will be linked to the National Death Index to identify all causes of death.
Findings will provide important information about the safety and efficacy of LSDP medications.
MedicineInsight, a longitudinal general practice data platform, was designed to improve the post-marketing surveillance of medicine use in Australia and to support improvement activities in general practices.
This study is a feasibility project which seeks to establish whether it is possible to link de-identified MedicineInsight data to the Medicare Benefits Schedule and to the Pharmaceutical Benefits Scheme.
Study findings will inform evidence-based decisions regarding health policy and health priority areas for funding to improve health outcomes for general practice patients.
The Royal Commission into Aged Care Quality and Safety was actioned on 8 October 2018 with a final report expected in 2020.
The AIHW will undertake this study as part of the Royal Commission.
This study has the following research questions:
Linked data will be analysed from the following datasets: the National Aged Care Data Clearinghouse, the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Study findings will inform the Royal Commission, contributing to the following areas of aged care in Australia:
In Australia, the two most prevalent forms of psychological distress are anxiety and depression, with the latter being the most common predictor of suicide. The rising prevalence of anxiety and depression and the increased rates of suicide-related mortality have, unfortunately, placed significant emotional and financial burdens, not only on the healthcare system, but also on many households and workplaces.
Many interventions exist to manage depression and anxiety, such as psychological therapies, medication and telephone and internet counselling.
The MindSpot Clinic, funded by the Commonwealth Government, is a community resource which provides telephone and internet counselling to individuals with anxiety and/or depression, including those reporting suicidal thoughts and plans.
To examine the effectiveness of the MindSpot Clinic in treating individuals with anxiety and/or depression, this study seeks to investigate suicide rates among individuals who registered with MindSpot between 2013 and 2016.
Data will be linked to the National Death Index to obtain relevant mortality data.
Study findings will enable therapists at the MindSpot Clinic to assess the effectiveness of existing interventions in the prevention of suicide. Findings will also inform any necessary improvements to current interventions to maximise quality of life among those with anxiety and/or depression.
This study examines hepatitis B and C incidence in South Australia and the Northern Territory. It also examines treatment use and health outcomes.
The study cohort will consist of individuals with a hepatitis B or C notification in South Australia or the Northern Territory.
Findings will inform future policies designed to reduce the burden of disease associated with hepatitis B and C.
In Australia, HIV is an incurable and a debilitating disease, placing significant financial demands on the healthcare system. To reduce the burden of disease and ultimately to supress the virus, healthcare professionals have introduced several initiatives: regular surveillance and testing, commencing treatment early, and adherence to treatment. These initiatives represent the HIV cascade of care—a widely used approach to describe the benchmark stages along the care pathway to viral suppression.
This study attempts to enhance routine HIV surveillance by improving the accuracy of the current cascade of care and producing cascades for priority populations.
A study cohort will be drawn from the National HIV Registry and linked to the National Death Index, the Medicare Enrolment File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare professionals can use study findings to increase the accuracy of HIV surveillance and reduce the debilitating effects of this viral infection.
The Kolling Institute Tumour Bank, established in 1992, collects and stores tumour tissue from patients undergoing surgery. The Tumour Bank also collects and stores tissue and blood samples from patients at risk of cancer. In total, approximately 10,000 patients with different tumour types, both benign and malignant, have been recruited since the Tumour Bank was first established.
This study examines survival rates among patients in the Tumour Bank.
The study cohort consists of Tumour Bank patients, who underwent surgery at either Royal North Shore Hospital, North Shore Private Hospital or Mater Hospital.
Study findings will enable healthcare professionals to update the Tumour Bank by identifying deceased patients and their cause(s) of death.
Psychological distress is a common response to life-threatening cardiovascular events. Patients have typically displayed symptoms of anxiety and depression in the months following a myocardial infarction. This psychological distress can be a risk factor for additional cardiovascular events and, in severe cases, mortality.
The ADVENT study, a large prospective investigation that ran from 2013 to 2016, examined the prevalence of depression and anxiety, among patients, one and two years after a myocardial infarction. It also investigated the interaction between psychosocial and biological factors in the onset and maintenance of depression and anxiety.
This study extends the scope of the ADVENT study by investigating whether psychological distress following a cardiovascular event is a risk factor for mortality.
ADVENT study cohort data will be linked to the National Death Index.
Healthcare professionals can use study findings to improve quality of life following a major cardiovascular event by reducing the risk of psychological distress and mortality.
Australian Defence Force (ADF) personnel who transition from active service to civilian life represent a vulnerable group in the population. Exposure to potentially traumatic events, during active service, can significantly elevate their risk of developing depression and/or anxiety later in life. In severe cases, some personnel may engage in self-harm and suicide.
In response to this national concern, the Transition and Wellbeing Research Mental Health Prevalence Study investigated emotional well-being and help-seeking behaviour among transitioned ADF personnel. An important finding was that individuals who were medically discharged had higher psychological distress compared to those who were not medically discharged. Furthermore, a large number of transitioned personnel with a mental illness had not sought assistance.
This study extends the Transition and Wellbeing Research Mental Health Prevalence Study by examining, in more detail, the transition experience of personnel at risk of depression and anxiety.
Data will be linked to the National Death Index to identify deceased personnel so study investigators can exclude these individuals from the study.
Study findings will facilitate a better understanding of the needs of transitioned ADF personnel, enabling healthcare professionals to meet these needs.
Surgery and radiotherapy are the most common treatments of breast cancer. However, the proportion of women who receive surgery and/or radiotherapy, in accordance with existing optimal care guidelines, is unknown. Furthermore, the factors that predict non-concordance are not clear.
This study investigates discrepancies between breast cancer care practices and existing best-practice guidelines.
The study cohort consists of women, in NSW, with an invasive in-situ breast cancer diagnosis. The study cohort will be drawn from the NSW Cancer Registry and the NSW Admitted Patient Data Collection, and will contain approximately 75,000 women.
Study findings will improve existing practices for the treatment and care of breast cancer patients, enhancing quality of life and reducing the burden of disease.
In Australia, colorectal cancer is one of the leading causes of mortality among men and women. To reduce the burden of disease, the Commonwealth Government introduced the National Bowel Cancer Screening Program (NBCSP), encouraging routine screening for symptoms of colorectal cancer.
The NBCSP typically targets individuals aged over 45 years due to their elevated risk of colorectal cancer. However, little is known about patterns of colorectal cancer screening and colonoscopy use within this population sub-group.
This study examines colorectal cancer screening and colonoscopy use among individuals in the 45 and Up Study cohort.
A study cohort, drawn from the 45 and Up Study, will be linked to the NBCSP.
Study findings will provide important information colorectal cancer screening practises and colonoscopy use among individuals in the 45 and Up Study cohort.
Emergency services (e.g. police, ambulance and mental health crisis assessment teams) provide a frontline response to mental health crises such as self-harm and suicide. In Australia, it is estimated that three out of every 100 individuals will attempt suicide during their lifetime. However, little is known about the number of suicide calls that police or ambulance responders receive each year and, more importantly, whether emergency responses are effective in meeting the needs of individuals at mental health crisis and at risk of suicide.
The Partners in Prevention, a study funded by Queensland Health, Suicide Prevention Health Taskforce and the National Health and Medical Research Council, has the following aims:
A study cohort will be drawn from Queensland Police and Queensland Ambulance records.
Emergency service agencies can use study findings to inform best-practice models for responding to individuals at risk of self-harm and/or suicide in the community.
ACCESS is a health surveillance system which monitors the incidence of and treatment of blood-borne viruses and sexually transmissible diseases in Australia. Approximately 150 clinics and laboratories participate in ACCESS.
This study investigates treatment patterns among ACCESS patients.
The study cohort will be drawn from 16 laboratories that contribute HIV and hepatitis B and C data to ACCESS.
Data will be linked to the Pharmaceutical Benefits Scheme.
Study findings will inform future updates to ACCESS. Healthcare professionals can use this data to improve the treatment of blood-borne viruses and sexually transmissible diseases.
This study investigates opioid use patterns among individuals presenting with neck and/or back soft tissue injuries to hospital emergency departments.
The cohort will be drawn from emergency department presentations at six Queensland hospitals. It will consist of adult patients who presented with acute neck and/or back soft tissue injuries between 01 January 2019 and 30/06/2019.
Data will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.
Study findings will inform the development of interventions to improve the management of patients presenting with acute neck and/or back soft tissue injuries to hospital emergency departments.
This study examines adverse health, developmental and educational outcomes, including risk factors, among infants.
The cohort will consist of babies, born between January 2008 and December 2017, drawn from the Queensland Perinatal Data Collection. The cohort will also contain the mothers of these babies.
The study cohort will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme. Data will also be linked to the Australian Early Development Census to assess developmental and educational outcomes.
Study findings will inform an evidence base for infants who may be at risk of adverse health, developmental and educational outcomes. Healthcare professionals can use this evidence base to develop initiatives and approaches to assist these infants and their families.
The Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) compiles data about all joint replacement surgeries in Australia.
This study extends the linkage work undertaken in a past project: EC2012/2/24 in which data from the AOANJRR was linked to the National Death Index (NDI).
Data will be linked to the NDI to obtain important mortality data about deceased patients.
Study findings will enable researchers to periodically update the AOANJRR with important mortality data. Researchers can use findings to monitor survival outcomes of all individuals who underwent joint replacement surgery in Australia. Healthcare professionals can use these findings to develop care and management initiatives to maximise quality of life among individuals who undergo a joint replacement.
Individuals transitioning from correctional facilities to the community are at risk of adverse health outcomes such as substance dependence, chronic medical conditions and, in severe cases, mortality. To maximise health outcomes, effective post-release primary care is essential.
ReConnect, a primary care service in Victoria, delivers intensive post-release services to at-risk individuals such as Aboriginal and Torres Strait Islander people, women, and those who have committed serious violent or sexual offences.
This study examines health outcomes, particularly mortality, among individuals transitioning from correctional facilities to the community. The study cohort will consist of existing ReConnect clients.
Linked data will contribute to enhancing ReConnect services and improving outcomes for individuals transitioning from correctional facilities to the community.
The Australian and New Zealand Hip Fracture Registry (ANZHFR) was established to optimise health outcomes for hip fracture patients. It outlines standards for care and secondary prevention.
With Australia’s ageing population and the tendency for older Australians to be over-represented in hip fracture prevalence rates, the ANZHFR is crucial to enabling healthcare professionals to maximise quality of life among hip fracture patients while reducing financial demands on the healthcare system.
This study investigates survival rates among hip fracture patients by identifying deceased individuals in the ANZHFR. Mortality is a key outcome measure for hip fracture patients.
ANZHFR data will be linked to the National Death Index (NDI) to identify deceased individuals at several follow-up periods.
Researchers will use mortality data, drawn from the NDI, to update the ANZHFR. Healthcare professionals can use the ANZHFR to guide and inform care plans designed to meet patients’ treatment needs and maximise treatment outcomes and quality of life.
Homelessness is a prominent risk factor for adverse health outcomes, poor quality of life and reduced life expectancy. Furthermore, at St Vincent’s Hospital, Melbourne, homeless individuals have been consistently over-represented in emergency department presentations.
A primary aim of this study is to examine health outcomes among homeless patients, presenting to St Vincent’s Hospital, Melbourne. A secondary aim is to compare mortality rates between homeless patients and non-homeless patients.
The study cohort will consist of a homeless patient cohort and a comparison group. The homeless patient cohort will be drawn from emergency department presentations at St Vincent’s Hospital between 1 January 2003 and 31 December 2004. A comparison group will be drawn from the emergency department records. The study cohort will be linked to the National Death Index to obtain important mortality data about patient outcomes.
Healthcare professionals can use study findings to improve health outcomes among homeless individuals presenting to hospital emergency departments.
Soft tissue sarcoma is a rare type of tumour, accounting for less than 1% of all malignancies in adults. The rarity of this tumour poses significant treatment challenges for healthcare professionals.
This study investigates healthcare use among patients with soft tissue sarcoma in Australia. This study also investigates the financial burdens associated with the management of this cancer.
A patient cohort will be drawn from the Australian Comprehensive Cancer Outcomes and Research Database (ACCORD). Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare professionals can use study findings to improve the treatment of soft tissue sarcoma, maximising quality of life.
Young people who have had contact with the juvenile justice system are vulnerable group in the population. They have been over-represented in prevalence rates for mental illness, substance abuse, and risk-taking behaviour.
Young people are particularly at risk of these health and behavioural concerns following release into the community from juvenile correctional facilities.
To address these health and behavioural concerns, this study examines health service use and mortality among young people, across Australia, who have been exposed to the juvenile justice system. This study also attempts to establish an evidence base to inform initiatives that may alter adverse trajectories and reduce the risks of morbidity and mortality.
The study cohort will consist of all individuals in the AIHW Juvenile Justice National Minimum Dataset (JJNMD) from 2000 to 2019. A comparison group, matched to the JJNMD cohort, will be drawn from the Medicare Enrolment File.
The study cohort and the comparison group will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare professionals can use study findings to reduce the risks of mental illness, substance abuse and risk-taking behaviour among young people who have contact with the juvenile justice system.
The International Study of Comparative Health Effectiveness with Medical and Invasive Approaches (ISCHEMIA) is an international, randomised study which aims to identify the most optimal approach to managing patients with ischaemic heart disease and those with advanced chronic kidney disease.
This study examines mortality outcomes, over time, among a small subset of the ISCHEMIA cohort.
Study findings will enable ISCHEMIA investigators to monitor health outcomes over time.
The Sixth Community Pharmacy Agreement (6CPA) was developed to improve the accessibility of pharmaceutical services across Australia while enhancing patient care and health outcomes.
A previous investigation (project: EO2019/1/507) assessed the effectiveness of four community pharmacy programs, funded under the 6CPA, according to medication adherence, healthcare use, and cost effectiveness.
This study extends the previous investigation by using a larger study cohort.
The study cohort will consist of individuals drawn from the 6CPA Program. The study will also include a control group.
Study findings will inform initiatives designed to improve the accessibility of pharmacy services in the community.
In line with Australia’s ageing population, dementia has emerged as a major burden of disease and a leading cause of death.
A number of risk factors have been linked to dementia, many of which are modifiable lifestyle factors, such as educational attainment, health complaints during midlife (e.g. hypertension, obesity, diabetes), and late-life (e.g. physical inactivity, social isolation, depression).
This study will draw participants from The 45 and Up Study cohort to identify modifiable risk factors for participants who are receiving treatment for dementia (or who received such treatment).
Data will be linked to the National Death Index, the Australian Cancer Database, the National Aged Care Data Clearinghouse, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare providers can use study findings to improve the treatment of dementia.
In response to the high prevalence of heroin dependence and its significant burden of disease in Australia, the Australian Treatment Outcome Study (ATOS) was implemented. The ATOS is Australia’s largest and longest longitudinal study of heroin dependence.
The ATOS first recruited study participants, in 2001, from 19 treatment facilities. At the time of recruitment, participants were either receiving pharmacotherapy, undertaking treatment at residential communities, or detoxification.
This study is a follow-up of the original ATOS study cohort. It will investigate patterns and predictors of heroin use. This study will also examine long-term outcomes such as remission rates, physical and psychiatric health, health service use, criminal involvement, and mortality rates.
An ATOS cohort will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare providers can use study findings to improve the treatment of heroin dependence.
Aboriginal and Torres Strait Islander people have displayed a higher incidence of end-stage kidney disease compared to non-Aboriginal and Torres Strait Islander people. Furthermore, mortality rates stemming from end-stage kidney disease are also higher among Indigenous Australians.
In response to these discrepancies, the ARDAC study—a prospective, longitudinal investigation—was developed to examine risk factors for end-stage kidney disease among Indigenous and non-Indigenous individuals. Study participants were primary school children, aged between six and twelve years, from urban, rural and remote regions of New South Wales.
This study investigates the prevalence of end-stage kidney disease, diabetes, and cardiovascular disease in the ARDAC study cohort. This study also examines risk factors for chronic kidney disease and its long-term health effects.
A study cohort consisting of Indigenous ARDAC study participants and non-Indigenous controls will be linked to the following datasets: the National Death Index; the Medicare Enrolment File; The Medicare Benefits Schedule; the Pharmaceutical Benefits Scheme; the National Diabetes Services Scheme; and the Australian and New Zealand Dialysis and Transplant Register.
Study findings will contribute to an evidence base that healthcare policymakers and healthcare providers can use to develop sustainable and culturally sensitive treatments for end-stage kidney disease among Indigenous Australians. Furthermore, it is envisaged that findings will reduce the gap between Indigenous and non-Indigenous Australians in the incidence of end-stage kidney disease.
The Personality and Total Health (PATH) Through Life Project is a longitudinal cohort study of young, middle-aged and older adults in the Australian Capital Territory and surrounding areas of New South Wales.
The PATH Through Life Project has investigated trajectories of depression, anxiety, substance abuse, and cognitive decline. It has also examined risk and protective factors, including relationships between depression, anxiety, substance abuse and cognitive decline.
This study is an extension of a previous linkage project: EC2008/4/30.
It will examine survival outcomes among PATH Through Life study participants. Data will be linked to the National Death Index.
Study findings will contribute to an evidence base that healthcare providers can use to identify risk and protective factors for mortality.
This study examines cardiovascular outcomes among babies born in the Northern Territory, between 1986 and 2016, and their mothers.
Healthcare providers can use study findings to improve cardiovascular health in the Northern Territory.
Aboriginal and Torres Strait Islander people, compared with non-indigenous Australians, display higher rates of cardiovascular disease.
This study examines disparity in incidence rates of cardiovascular disease between Indigenous and non-Indigenous individuals. It is an extension of an earlier linkage project (EO2015/2/155).
The study population will consist of adults who were treated for cardiovascular disease in New South Wales or the Australian Capital Territory.
Policymakers and healthcare providers can use study findings to deliver improvements in health service delivery, equity of access and quality and safety of patient care for Aboriginal and Torres Strait Islander people, and other population groups with cardiac conditions.
This study investigates predictors of long-term survival among patients admitted to Intensive Care Units (ICUs).
The study cohort will consist of adult and children ICU patients in Australia and New Zealand.
Healthcare providers can use study findings to improve long-term outcomes among ICU patients.
Assisted Reproductive Technologies (e.g. in-vitro fertilisation, intrauterine insemination, and ovulation-induction hormonal medications) have enabled many individuals to have children.
Currently, the second highest rates of assisted reproductive technology occur in Australia, with almost four per cent of Australian children conceived using this technology.
Despite this high level of use, assisted reproductive technologies have been linked to cancer in women and their children.
This study investigates whether assisted reproductive technologies increase the risk of cancer in women and their children.
The study cohort will consist of women who received assisted reproductive technologies and women who did not receive this medical assistance. The cohort will also consist of children conceived through assisted reproductive technologies and those conceived naturally.
Data will be linked to the Medicare Enrolment File, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. Data will also be linked to the National Death Index and the Australian Cancer Database.
Healthcare providers can use study findings to enhance health outcomes in women and their children following the use of assisted reproductive technologies.
This study investigates risk factors and potential biomarkers for Sudden Unexpected Death in Epilepsy (SUDEP).
Clinicians can use study findings to assist in identifying patients who may be at increased risk of SUDEP, enabling early intervention.
This study examines the effect of the National Bowel Cancer Screening Program on colorectal cancer screening participation, treatment use, and survival outcomes among individuals with severe mental illness.
Historically, severe mental illness has been a risk factor for poor screening participation, reduced treatment use, and mortality.
A key aim of this study is to compare bowel cancer screening participation between patients with severe mental illness and those without severe mental illness.
National Bowel Cancer Screening data will be linked to the National Death Index, the Australian Cancer Database, the Medicare Enrolments File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.
Healthcare providers can use study findings to improve the management of colorectal cancer, particularly among patients with severe mental illness.
This study will be undertaken as part of the Royal Commission into Victoria’s Mental Health System.
Specifically, this study examines the following areas:
The study cohort will consist of individuals who accessed a mental health service in Victoria.
Data will be linked to the National Death Index, the MBS, and the PBS.
Study findings will assist the Commission to investigate how well the Victorian Mental Health system is responding to the needs of the community while identifying opportunities for improvement.
The Mater–University of Queensland Study of Pregnancy (MUSP), starting in 1981, was originally a prospective study of pregnant women, with data first collected after an initial antenatal examination. Study investigators have since expanded the study scope to collect data about mothers and their children.
The MUSP is one of a few longitudinal studies, worldwide, which has examined health trajectories in mothers and their children.
This study examines survival outcomes, including mortality risk factors (e.g. mental illness and substance abuse) and mortality protective factors (e.g. physical activity and healthy lifestyle).
MUSP data will be linked to the National Death Index.
Healthcare providers can use study findings to enhance survival outcomes among pregnant women and their offspring.
AIHW is working with the Commonwealth Department of Health and state and territory health authorities to create the National Integrated Health Services Information (NIHSI) Analysis Asset (AA). The NIHSI AA will contain de-identified data from 2010–11 onwards on admitted patient care services (in public and private hospitals where available), emergency department services and outpatient services in public hospitals for all participating states and territories, along with Medicare Benefits Schedule data, Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme data, Residential Aged Care data and National Deaths Index data. The incorporation of data into the NIHSI AA will be staged and will be dependent on timing of receipt of the required data.
These de-identified data will initially be available to selected analysts nominated by the data providers – state and territory health authorities, the Australian Government Department of Health and the AIHW in the mid-to-second half of 2020. Sometime after that, other users will be able to apply for access to the NIHSI AA, or to data extracted from the NIHSI AA, provided their proposed use of the data complies with the AIHW Ethics Committee–approved purposes for the NIHSI AA. They are:
Patients who undergo a coronary angiograph are at risk of developing Contrast-Induced Acute Kidney Injury (CIAKI). On average, 76,000 coronary angiographs are performed each year in Australia, and in approximately 25 per cent of patients, CIAKI is predicted to develop, leading to ongoing dialysis and, in severe cases, mortality.
To reduce the risk of CIAKI in patients receiving coronary angiography, and to establish an evidence-base for the effectiveness of interventions, researchers at the George Institute developed the PRESERVE (Prevention of Serious Adverse Events Following Angiography) study. This is a double-blind, randomised controlled trial designed to investigate the effectiveness of several treatments—bicarbonate compared to saline and N–Acetylcysteine (NAC) compared to placebo—in reducing the risk of CIAKI. Study outcome measures will include survival rates, kidney functioning, frequency of dialysis, rates of hospitalisation, and cardiovascular events.
This project examines survival outcomes in 311 patients recruited to the PRESERVE cohort. Data will be linked to the National Death Index (NDI) to obtain data about any deceased patients.
The PRESERVE study findings will guide and inform an evidence-base which healthcare providers can use to develop and implement interventions designed to reduce the risk of CIAKI, and its adverse effects, in patients who undergo a coronary angiograph.
In response to Australia’s ageing population and the demands it places on the healthcare system, this study examines the use of health and aged care services between 2002 and 2016 and the characteristics of individuals using these services. The study will investigate risk factors for adverse health events and mortality; and assess and identify successful areas and areas in need of improvement in aged care health service delivery.
A study cohort drawn from the National Aged Care Data Clearinghouse will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. The cohort will contain approximately one-million individuals, aged 65 years and over, who have received aged care services (e.g., residential aged care; aged and transition care packages; and home and community care support).
Ten specific research questions have been proposed:
The results of the study will guide and inform policies and initiatives to enhance the quality of life and wellbeing of older Australians.
The project will also support the development of the Registry of Older South Australians (ROSA) providing information on the historical utilisation rates of health and aged care services within the ROSA population.
Hip fractures—particularly in older people who display a significantly higher risk of sustaining these injuries—have been linked to marked physical and psychological impairment. Furthermore, due to the complexity of hip fractures and the subsequent need for extensive surgical intervention, these injuries have placed substantial demands on the healthcare system. With an ageing population, rates of hip fractures will only increase.
There is therefore a need to establish an evidence-base for the management of hip fracture patients to enhance physical and psychological functioning, reducing the burden on the healthcare system.
This study examines healthcare trajectories and long-term outcomes following a hip fracture in older patients.
The study cohort consists of approximately 42,000 patients, aged 50 years and older, who sustained a fall-related hip fracture and who were admitted to a NSW hospital between 1 January 2010 and 31 December 2016.
This patient cohort will be linked to the following Commonwealth datasets:
Study findings will contribute to a much-needed evidence-base about healthcare pathways (and their effectiveness) in older patients who sustain hip fractures. Healthcare providers will use this evidence-base to improve the management of hip fracture patients, enhancing quality of life.
This study will investigate patterns of first seizure management and whether delayed assessments are associated with poor patient outcomes and high treatment costs.
The Centre for Victorian Data Linkage will prepare a study cohort consisting of approximately 5,000 patients, aged 18 years and over, who had a first seizure and who presented to a Melbourne hospital between January 2008 and December 2017. Data will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.
Study findings will contribute to the development of the First Seizure Assessment and Management Algorithm—an evidence-based model that will enable healthcare professionals to assess and treat first seizure patients in a timely manner.
In Australia, hepatitis B (HBV) and/or hepatitis C (HCV) are prominent burdens of disease, associated with poor health outcomes and, in severe cases, mortality. Fortunately, effective treatments exist.
This study will monitor HBV and/or HCV rates and survival outcomes in Western Australia. The study cohort will consist of all individuals who had a HBV and/or HCV notification in the state between 1990 and 2016.
Findings will assist healthcare practitioners to evaluate the effectiveness of existing treatments for HBV and/or HCV infections.
The Veterans’ Medicines Advice and Therapeutics Education Services (Veterans’ MATES), a program funded by the Department of Veterans’ Affairs, designed to maintain the health and wellbeing of veterans, has been running since 1998. This program provides health education to veterans and advice to their healthcare providers.
This study will investigate survival outcomes among individuals in the Veterans’ MATES program. Data will be linked to the National Death Index.
Findings will assist healthcare practitioners to maintain the health and wellbeing of veterans.
Australia’s population continues to age, placing increasing demands on the health and aged-care sectors. It is therefore important to ensure that aged-care services are provided in an efficient and cost-effective manner.
This study will establish the Registry of Older South Australians (ROSA)—a data collection to monitor the health and wellbeing; service utilisation; medication use; and mortality of older South Australians.
This study has received substantial funding from the South Australian Premier’s Research and Industry Fund, and builds on the Evaluating Healthy Ageing in Australia project (EO2018/1/418).
The study cohort will consist of approximately 16,000 individuals who received (or are receiving) an aged care assessment in South Australia. These individuals will be drawn from the National Aged Care Data Clearinghouse.
The study cohort will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. Data will also be accessed from several South Australian health administrative datasets.
Study findings will identify various pathways through which individuals access services in the aged-care and healthcare sectors. Healthcare policymakers can use this information to guide decisions about the provision of healthcare services to older individuals.
This study, funded by the National Health and Medical Research Council, and undertaken by The George Institute and the Centre for Big Data Research in Health at the University of NSW, investigates disparities in treatment and health outcomes among patients with myocardial infarction and other cardiovascular diseases, and whether demographic variables (e.g. age, sex, religion, socio-economic and indigenous status) account for these disparities.
The study cohort consists of approximately 100,000 men and women admitted to a NSW hospital with a cardiovascular event/myocardial infarction or who have a NSW Ambulance record related to those conditions.
Study findings will inform healthcare pathways by identifying modifiable factors that account for disparities in treatment and health outcomes across cardiovascular disease patients.
This study will examine whether retinal microvascular signs are associated with poor prognoses in patients with coronary heart disease (CHD). This study will also investigate survival outcomes.
The study cohort will consist of 1,680 CHD patients.
Study findings will enable healthcare practitioners to identify CHD patients at risk of poor prognoses.
Infections arising from Antimicrobial Resistance (AMR) have been linked to rising rates of morbidity; lengthy hospital stays; increased health expenditure; and, in severe cases, mortality. This study, commissioned by the Commonwealth Department of Health, will use a case-controlled design to examine AMR; its burden of disease; and its clinical and economic impact.
The study will comprise two groups of patients with AMR drawn respectively from state and territory hospital data, and the Pharmaceutical Benefits Scheme plus two comparative control groups consisting of people with drug-susceptible (non-resistant) microbial infections. The first round of linkage will involve Queensland and Northern Territory hospital data.
These data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will provide information about the prevalence of AMR infections; the duration and course of AMR infections; and the economic and clinical impacts of AMR infections. This information will inform healthcare policy, health expenditure and resource allocation. Healthcare practitioners can also use this information to inform best practice treatment models.
Barrett’s Oesophagus, a chronic medical condition, can be a precursor to oesophageal cancer.
The PROBE–NET (PROgression of Barrett’s Esophagus to cancer NETwork) is a multi-centre consortium devoted to the study of Barrett’s Oesophagus and oesophageal cancer. A key aim of PROBE–NET is to quantify the overall and cause-specific risks of progression to cancer and mortality in patients with Barrett’s Oesophagus.
A study cohort containing 700 patients undergoing upper-gastrointestinal endoscopy will be linked to the National Death Index.
Study findings will enable healthcare practitioners to improve the treatment of patients with Barrett’s Oesophagus, delaying (and ideally preventing) the onset of oesophageal cancer.
This study will examine the effect of primary healthcare models on rates of hospitalisations and emergency department presentations among stroke patients.
The study cohort will consist of approximately 25,000 patients who were hospitalised between January 2012 and December 2016. Patients will be drawn from the Australian Stroke Clinical Quality Registry (AuSCR).
Data will be linked to the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and the National Aged Care Data Clearinghouse.
Study findings will inform improvements to existing primary healthcare models, enhancing quality of life for stroke survivors.
The Australian Diabetes, Obesity and Lifestyle (AusDiab) study is the largest prospective study in Australia to examine the natural history of diabetes and its complications. The AusDiab commenced in 1999–2000 and has followed up participants in 2004–05 and 2011–12.
This study is an extension of a previous project (EC358), in which the AusDiab cohort was linked to the National Death Index (NDI) to investigate survival outcomes. In this study, data will be linked to the NDI, annually, over five years.
Study findings will continue to inform diabetes healthcare policy. Healthcare practitioners will continue to use AusDiab data to inform evidence-based treatment models.
Applicant: Baker Heart and Diabetes Institute Approval valid until: 1 May 2021
In recent years, reproductive technologies—particularly fertility treatments—have seen widespread use. However, some fertility treatments have emerged as risk factors for cardiovascular events.
The Long-term Influence of Fertility Treatment on Cardiovascular Events (LIFE) study investigates whether fertility treatments are risk factors for cardiovascular events.
A cohort of women (approximately 42,000) who received fertility treatment between 1978 and 2017 will be linked to the National Death Index.
Healthcare practitioners will use study findings to help reduce the risk of cardiovascular events in women receiving fertility treatment.
This study investigates whether self-harming patients admitted to an intensive care unit are at a greater risk of suicide, compared to those admitted to wards and those discharged from an emergency department.
A study cohort of approximately 400,000 patients will be linked to the National Death Index.
Study findings will identify treatment pathways and inform treatment protocols for self-harming patients.
This study examines government welfare use among homeless young people. It will support a 2017–18 Commonwealth Government initiative to reduce homelessness among young people.
The study cohort consists of individuals born in 1981 or later who appear in DOMINO (Data Over Multiple Individual Occurrences, a Department of Social Services income support data collection), between 2001 and 2017 and/or the Specialist Homelessness Services Collection (SHSC), an AIHW data collection, between 2011–12 and 2016–17.
DOMINO income support data will be linked to the SHSC.
Study findings will provide an evidence-base designed to improve housing and welfare outcomes for young people who are homeless or at risk of homelessness.
This study, undertaken in collaboration with state and territory cancer registries, examines variations in cancer stage and treatment pathways across population sub-groups and geographical locations, one year after diagnosis. It also investigates five-year survival outcomes.
A study cohort of approximately 70,000 individuals diagnosed with a top-five incidence cancer (breast, colorectal, lung, melanoma and prostate) between January and December 2011 will be linked to state and territory Admitted Patient Data Collections; the National Death Index; the Medicare Benefits Schedule; and the Pharmaceutical Benefits Scheme.
Study findings will contribute to an evidence-base designed to improve cancer patients’ survival and outcomes.
The ACT and SE NSW Breast Cancer Treatment Group Quality Assurance Project, a cohort study of breast cancer including its management and treatment outcomes, commenced in 1997 following the publication of the NHMRC Guidelines for the Management of Early Breast Cancer.
This project has examined disease and treatment parameters and survival outcomes. Healthcare practitioners have used the findings to improve clinical pathways. Findings also have informed the content of various educational and training programs.
This study has the following objectives:
The study cohort will consist of 6,300 individuals, and will be linked to the National Death Index.
Study findings will enable healthcare practitioners to identify both risk and protective factors for cancer-related mortality compared to other cause-related mortality, and to establish possible explanations for individual differences in breast cancer survival and thus to enhance survival and maximise quality of life.
The NSW Department of Family and Community Services has contracted Taylor Fry, an analytics and actuarial consultant, to undertake this study. It investigates patterns of support service use as a potential risk factor for homelessness.
NSW Government services data will be linked to the AIHW Specialist Homelessness Services Collection. A control group will be created from the Medicare Enrolment File.
Study findings will inform an evidence base designed to identify individuals at risk of homelessness while facilitating early intervention.
Dementia is highly prevalent in older adults. Prevalence rates are likely increase significantly as Australia’s ageing population continues to rise.
Studies of prescription patterns in older patients with dementia, who have been hospitalised for various conditions such as hip fractures, ischaemic stroke, myocardial infarction and diabetes have found lower prescription medication rates than those without dementia. This discrepancy may be due to the cognitive impairment, observed in patients with dementia, adversely affecting compliance with medication regimens.
This study further investigates prescribing rates in older patients with dementia. It also investigates the effect of discharge medication regimens on health and wellbeing among patients with and without dementia.
The study cohort consists of patients who discharged from public hospitals in Victoria, between 1 July 2012 and 31 December 2017, having previously presented with hip fractures, ischaemic stroke, myocardial infarction and diabetes.
Study investigators will use the findings to develop prescription guidelines for dementia patients, following discharge from hospital.
The Health in Men Study (HIMS) is a longitudinal study of the health and well-being of men aged between 65 and 84 in Western Australia. A total of 12,203 men were originally recruited at baseline in 1996. Since then, there have been six waves of follow-up.
Under a previous study (EO2016-2-250), HIMS data were linked to several Western Australian health datasets and aged care data.
Study investigators wish to examine mortality rates and the extent and costs of health service utilisation among individuals in the HIMS cohort.
The study cohort consists of 12,203 men recruited to the HIMS in 1996. Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
This study examines the rates and costs of potentially preventable medication-related hospitalisations among Aboriginal and Torres Strait Islanders in Queensland.
The study cohort will consist of Aboriginal and Torres Strait Islander patients admitted to a Queensland hospital between 1 January 2013 and 31 December 2017.
Study investigators will use the findings to establish an Indigenous-specific medication review service, designed to reduce rates of potentially preventable medication-related hospitalisations.
This study investigates mortality rates associated with cystic fibrosis—a highly debilitating genetic condition, affecting the lungs and the digestive system.
A study cohort will be drawn from the Australian Cystic Fibrosis Registry (ACFDR), a collection compiling diagnostic, clinical and outcome data about cystic fibrosis patients from 23 participating sites in Australia. The ACFDR has collected data, annually, since 1998.
Data will be linked to the National Death Index to update mortality data for individuals in the ACFDR, who have died since 1998.
Study findings will also assist investigators to identify risk and protective factors for mortality in cystic fibrosis patients.
The International Breast Cancer Intervention Study–I (IBIS–I) was a double-blind, randomised, controlled trial investigating the effectiveness of oral tamoxifen in the prevention of breast cancer. The IBIS–I was also a multi-national project, drawing women aged between 35 and 70 years, who were at a high risk of developing breast cancer. The trial started in 1992, with recruitment completed in 2001, and a total of 7,154 women participated.
A total of 2,514 women participated in the Australian tranche. During both follow-up assessments, study investigators found that tamoxifen was effective in reducing breast cancer incidence rates, compared to that of a placebo. This finding resulted in the inclusion of tamoxifen on the Pharmaceutical Benefits Scheme.
A study cohort consisting of the 2,514 Australian women will be linked to the National Death Index and the Australian Cancer Database with follow-up linkages every three to five years. These linkages will enable study investigators to examine cancer incidence and survival outcomes, over time.
Study findings will have important implications for the prevention of breast cancer in at-risk women. For those who develop breast cancer, study findings will inform treatment and management approaches to improve survival outcomes.
Cardiovascular disease is the largest contributor to the gap in health and mortality between Indigenous and non-Indigenous Australians.
This study retrospectively analyses data drawn from the MedicineInsight database—a large-scale, general practice dataset, whose data currency ranges from January 2007–January 2018.
The primary aim of this study is to examine cardiovascular risk, treatment utilisation and outcomes in Indigenous Australians. Other study aims include:
A cohort of over two million adults, drawn from the MedicineInsight database will be linked to the National Death Index.
Study findings will inform cardiovascular risk management pathways, identifying how cardiovascular disease is managed across the primary and tertiary care continuum. In addition, findings will assist healthcare providers to improve the treatment of cardiovascular disease in Indigenous Australians, reducing the gap in health and mortality between Indigenous Australians and non-Indigenous Australians.
In 2012, the NSW government amended existing workers’ compensation legislation by implementing a five-year limit on the duration of payments for all injured workers, except those with very serious injuries and those from specific occupational groups. Workers who reached the end of their compensation benefit period would then be eligible for welfare benefits. Prior to these changes, injured workers could receive incapacity payments until retirement age.
This study investigates patterns of healthcare and welfare use for injured workers whose compensation benefit ceased under the 2012 amendment (the Section 39 cohort). It also compares healthcare and welfare use between this cohort and two comparison groups: injured workers with shorter duration workers’ compensation claims and a community group.
Data will be linked to the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and Centrelink data.
Findings will inform healthcare and welfare policies, maximising the quality of life of injured workers.
The incidence and mortality rate of breast cancer in Indigenous Australian women are significantly higher than in non-Indigenous Australian women. Past studies have revealed that several factors—age, remoteness and degree of access to medical services—partially explain these discrepancies. Targeting these factors has enabled healthcare professionals to reduce the gap in breast cancer incidence rates and mortality rates between Indigenous Australian women and their non-Indigenous counterparts. However, there appear to be other factors that more prominently explain these discrepancies. Identifying these additional factors would enable healthcare professionals to further reduce the gap.
This study investigates the effect of known risk factors such as age, remoteness and degree of access to medical services, including biological factors and treatment utilisation, and whether these additional factors explain differences between Indigenous and non-Indigenous women.
The study cohort will be drawn from the WA Cancer Registry and consists of Indigenous Australian women diagnosed with any form of cancer in WA from 2001 onwards and non-Indigenous women matched according to age and remoteness.
The study cohort will be linked to the Pharmaceutical Benefits Scheme to establish the nature and extent of pharmaceutical interventions utilised.
Findings will enable healthcare professionals to reduce breast cancer mortality rates in Indigenous Australian women and further reduce the gap between Indigenous Australian women and their non-Indigenous counterparts.
Atherosclerosis, also known as arteriosclerotic vascular disease, is a condition in which plaque deposits build up on the inside of the artery walls resulting in narrowed and hardened blood vessels, disrupting blood flow. Atherosclerosis has been linked to serious cardiovascular complaints such as a heart attack or stroke and, in more severe cases, recurrent cardiovascular events.
Among individuals with a history of atherosclerosis, several interventions—pharmacotherapy (e.g. blood-pressure lowering medications) and lifestyle approaches (e.g. increased physical activity)—have been effective in clinical trials at preventing recurrent atherosclerotic events. Such trials have studied patients with histories of cardiovascular events, who are mostly compliant to treatment regimens, reducing the extent to which results can be generalised to those, who may have atherosclerosis but have not experienced a cardiovascular event.
This study investigates the effectiveness of secondary prevention strategies on reducing recurrent atherosclerotic events, and any subsequent cardiovascular events.
The sample will consist of adult patients who had at least one hospital admission for a secondary cardiovascular event (e.g. heart attack, stroke, lower limb ischemia), linked to atherosclerosis, between 2001 and 2016. Study investigators plan to compare health outcomes between patients who had two, or more, atherosclerotic events with a control group consisting of patients who experienced only one atherosclerotic event.
Healthcare professionals will be able to use study findings to reduce the likelihood of recurrent atherosclerotic and other cardiovascular events.
Osteoarthritis, a degenerative and debilitative condition, affects over two million Australians. With Australia’s ageing population, this number is likely to increase significantly. Currently, total joint replacement surgery—in particular, total knee replacement—is the most frequently used treatment. The majority of patients who receive a total joint replacement generally display positive outcomes, such as enhanced mobility and better quality of life. However, in a minority of cases, adverse treatment outcomes have been observed.
This study will develop predictive models to identify osteoarthritis patients who may benefit from total knee replacement surgery and those who may be at risk of adverse outcomes.
The study cohort will consist of approximately 475,000 patients, aged 45 years and over, diagnosed with osteoarthritis prior to 2018. This cohort will be linked to the National Death Index to identify all deceased patients, enhancing the accuracy of predictive models.
Study findings will contribute to the development of predictive models, enabling better identification and treatment of osteoarthritis patients who may be at risk of adverse outcomes after a total knee replacement and those who are likely to benefit from this intervention.
This study examines the burden of decease associated with diabetes across four jurisdictions in Australia, and investigates variations in health service use and outcomes, and relationships between medication regimens and diabetes complications.
A study cohort will be drawn from the National Diabetes Service Scheme and linked to the National Death Index, the Medicare Enrolment File and the Pharmaceutical Benefits Scheme.
Healthcare practitioners will be able to use study findings to improve the treatment and management of diabetes patients, reducing the burden of disease and maximising quality of life.
This study investigates post-surgical outcomes (e.g. incidence of stroke, heart attack, kidney failure, and hospital admission rates) among patients who underwent surgery to either repair or replace a mitral heart valve—also known as the bicuspid valve—the valve in the heart which regulates blood flow between the upper and lower chambers.
The study cohort consists of patients who underwent surgery either to repair or replace a mitral valve. Data will be linked to the National Death Index to establish survival rates, and to identify deceased patients who study investigators can then omit from follow-up assessment.
Study findings will contribute to an evidence base capturing post-surgical outcomes among patients who underwent surgery to repair or replace a mitral valve. This evidence base will inform the post-surgical care and management of patients, and enhance overall quality of life.
This study examines post-treatment outcomes among rheumatic heart disease patients, with the aim of establishing a surgical register.
The study cohort consists of patients who underwent surgery to treat rheumatic heart disease in the Northern Territory over the past 20 years. The cohort will be linked to the National Death Index to identify survival rates.
Study findings will facilitate the development of a surgical register, containing key information about post-surgical outcomes, including risk factors for adverse outcomes, among patients with rheumatic heart disease. This register will inform the care and treatment management of patients to maximise survival rates and quality of life.
Ovarian cancer is a prominent cause of mortality, with five-year survival rates less than 50 per cent.
This study investigates whether chemo-preventive medications (e.g., beta-blockers, bisphosphonates and raloxifene) are effective in treating, and even preventing, ovarian cancer.
A specific objective is to investigate the association between chemo-preventive medication use and ovarian cancer incidence, and survival rates.
State health administrative datasets will be linked with the National Death Index, Australian Cancer Database, and the Pharmaceutical Benefits Schedule.
Study findings will inform additional investigations to establish further ovarian cancer treatments, while also identifying potential prevention strategies.
Opioid-use disorders place considerable demands on the healthcare system. Moreover, these disorders are linked to high mortality rates.
Of the available treatments, pharmaceutical interventions are most commonly used to treat opioid-use disorders.
This study investigates risk factors for adverse outcomes following prescription opioid use, and aims to identify patients at most risk of adverse outcomes.
A cohort of adult, opioid-dependent patients will be linked with the following datasets: the National Death Index, the Australian Cancer Database, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Schedule. Data will also be linked with state and territory hospital and emergency datasets.
Findings will enable healthcare practitioners to identify patients at risk of adverse outcomes, following prescription opioid use, leading to better targeted interventions and a reduction in mortality rates.
Colorectal cancer prevalence continues to increase, posing a significant burden of disease. It is also a major cause of mortality.
There is a demand for ongoing research to inform procedures that enhance colorectal cancer patients’ quality of life, and survival rates.
This study will establish a linked, de-identified dataset of South Australian colorectal cancer patients. It will examine screening behaviour patterns, service use and adverse outcomes, and differences in these variables across time and socio-demographic group.
A cohort of South Australian residents diagnosed with colorectal cancer from 2003 onwards will be linked with the following Commonwealth datasets: the National Bowel Screening Register, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Schedule. Data will also be linked with several South Australian health datasets.
Study findings will facilitate early detection of colorectal cancer. Healthcare practitioners can target interventions to enhance quality of life and increase survival rates.
Colorectal cancer is highly prevalent in Australia. It is the second, most commonly diagnosed cancer, and generally has a poor prognosis.
The Colorectal Cancer Database contains information about colorectal cancer patients treated at Concord Hospital, NSW.
Healthcare practitioners have used the database to improve their understanding of the natural history of colorectal cancer, evaluate the effectiveness of surgical options and oncological treatments, and investigate the probability of relapse.
The AIHW previously linked the colorectal cancer database with the National Death Index (NDI). In the current study, the colorectal cancer database will be linked with the NDI to update patient information. An updated database will enable healthcare professionals to enhance the management of colorectal cancer patients.
While much is known about cardiovascular disease risk factors, little is known about differences in the incidence and magnitude across various demographic groups.
Women have historically displayed a lower risk of cardiovascular mortality than men. This difference is due to a multitude of factors. The hypothesis of this study is that, the addition of one risk factor, in this case diabetes, among a group of people who have a lower absolute risk for cardiovascular mortality (e.g., women) will have a greater relative impact than the addition of the same risk factor among a group of people already at higher risk for cardiovascular mortality (e.g., men).
This study investigates sex differences in cardiovascular mortality rates. It will use the results of a previous project—The Australian and New Zealand Diabetes and Cancer Collaboration¬—where several patient cohorts were linked with the National
Death Index and the Australian Cancer Database to examine relationships between obesity, diabetes, cancer incidence, and mortality.
Findings will lead to a better understanding of sex differences in cardiovascular mortality rates and have implications for improving cardiovascular mortality risk assessment. This will enable healthcare practitioners to implement early, targeted interventions to reduce mortality rates.
Indigenous Australians display a significantly higher incidence of cardiovascular disease than non-Indigenous Australians. There is also a discrepancy in the risk of cardiovascular-related mortality.
This study—the ENHANCeD project—will investigate the effects of depression and other psychosocial risk factors on cardiovascular disease among Indigenous Australians. Data from two studies (Men, Hearts and Minds, and Heart of the Heart) will be linked with the National Death Index to obtain important outcome measures: death status, date of death, and cause/s of death.
Findings will enable healthcare professionals to obtain a better understanding of psychosocial risk factors for cardiovascular disease among Indigenous Australians. This information will have implications for indigenous health policy development, enhancing the availability and accessibility of targeted interventions.
The InSCI Community Survey examines factors that influence activity levels, health and well-being among spinal cord patients.
This study will utilise InSCI survey data to inform health policy to improve the development and implementation of healthcare services.
Study investigators will establish a cohort by recruiting patients from various healthcare databases, managed by state spinal cord injury units, and other sources such as spinal cord injury associations, care and support agencies, and third party insurers.
The data will be linked with the National Death Index in order to exclude deceased individuals from the study cohort.
Healthcare practitioners can use InSCI survey results to improve treatment and support services for spinal cord patients.
The family environment is critical in shaping a child’s psychosocial development. Most studies investigating child development are limited in their ability to investigate the various effects among children within each family unit because they focus on individual children.
The Mothers and their Children’s Health (MatCH) study is an extension of the Australian Longitudinal Study on Women’s Health, and builds on the current knowledge base of the impact of familial factors on psychosocial development. This study examines the contributions of maternal health and well-being and family environment characteristics towards a child’s development, and whether there is any variation in developmental outcomes across children in the same family.
MatCH study data will be linked with the Australian Early Development Census to obtain important information about children who commenced school during any of the census years: 2009, 2012 or 2015. Findings will provide further information about the contribution of familial factors towards psychosocial developmental outcomes, informing policy and enhancing existing initiatives.
This study examines cancer patients’ out-of-pocket expenditure on healthcare services. It also quantifies the distribution of the cost of cancer, while identifying any inequalities between demographic groups.
Specific objectives include:
Another objective is to investigate relationships among health system use, health system expenditure, out-of-pocket expenditure, and clinical outcomes.
A cohort from the Queensland Cancer Registry will be linked with state hospital and emergency care datasets, the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.
Findings will provide information about cancer patients’ expenditure on healthcare utilisation, and any demographic discrepancies. This will have implications for improving the availability and accessibility of healthcare services.
Stroke survivors present unique healthcare needs. General practitioners have historically been a primary source of care, through Medicare-funded Chronic Disease Management Programs and other coordinated care models.
This project examines the care of stroke survivors under Medicare-funded programs and other models of General Practitioner coordinated care to identify inequalities in availability and accessibility of care.
Australian Stroke Clinical Registry data will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule to obtain information about services and prescriptions related to the prevention and treatment of stroke and related conditions.
Findings will inform policy to reduce any inequalities in the availability and accessibility of interventions for stroke survivors.
The International Cancer Benchmarking Project (ICBP) examined survival among breast, colorectal, lung, and ovarian cancer patients diagnosed between 1995 and 2007. The ICBP also compared survival rates between six, high-income countries.
Findings demonstrated improvements in overall survival rates. However, there were differences in survival rates across countries. Another large, international study—the CONCORD-2—investigated survival among cervical, liver, prostate, and stomach cancer patients, in addition to the cancers studied in the ICBP, and obtained similar findings.
The current investigation, SurvMark-2 will build on the ICBP by investigating cancer incidence, mortality, cancer coding, registration practices, and death registration practices. The SurvMark-2 will also examine eight cancers of public health importance: colon, liver, lung, oesophagus, ovarian, pancreatic, rectum, and stomach.
Cancer incidence data and survival and mortality data will be supplied to the International Agency for Research on Cancer (IARC; Lyon, France) by the cancer registries of five high-income countries.
Data will be drawn from the NSW Cancer Institute, and linked with the National Death Index to obtain date and all causes of death. The linked dataset will be sent to the IARC for analysis.
Findings will provide important information about variations in cancer survival rates between countries, and across different cancer types. Furthermore, the cancers included in this study have considerable public health significance in Australia.
Healthcare professionals and policymakers can utilise study findings to enhance the care and management of cancer patients and increase survival rates.
Maternity and child healthcare costs are a significant source of expenditure for many families. But, for some families, these costs can be a significant barrier to accessing healthcare services.
To date, limited research has examined out-of-pocket expenditure for maternity and child healthcare services.
This study examines out-of-pocket expenditure for healthcare services, among mothers who gave birth in Queensland, between 2012 and 2015.
The study population consists of mothers who gave birth in Queensland, between 01 July 2012 and 30 June 2015, and their babies. A cohort comprising data drawn from several Queensland health administrative datasets will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.
Findings will have important implications for the development of policies and initiatives to enhance the accessibility of maternity and child healthcare services.
This study investigates survival outcomes for patients, who underwent mitral valve replacement, at the Prince of Wales Hospital, between January 1996 and December 2016.
A patient cohort will be linked with the National Death Index.
Findings will enable healthcare professionals to identify preoperative and operative characteristics that may be risk factors for mortality, following mitral valve replacement. Furthermore, study investigators have examined survival outcomes for mitral valve repair patients. Findings will also enable healthcare professionals to compare mortality rates between mitral valve replacement patients and mitral valve repair patients.
The Childhood to Adolescence Transition Study (CATS) is a longitudinal study that began in 2012. It has followed a cohort of over 1,200 children through the middle years of school, in and around metropolitan Melbourne. Data are collected annually and, to date, investigators have collected five waves of data.
The purpose of this study is to identify individual, family and school factors that contribute to children’s developmental and educational outcomes.
CATS data will be linked with Australian Early Development Census (AEDC) data. The AEDC is a nationwide, data collection of early childhood development from the first year of school. It collects data about the following areas: physical health; social competence; emotional maturity; language and cognitive skills; and communication skills.
Findings will inform health and education policies to enhance children and young people’s health, wellbeing and academic attainment.
Breast cancer is one of the most prevalent cancer types in Australia. Approximately 17,000 women are diagnosed each year. Of those diagnosed, approximately 3,000 die each year. Recent improvements in adjuvant therapy have improved survival rates. However, there is no Australian population-based information about their impact on the risk of cancer spread (metastasis) and survival after metastasis.
This linkage project will investigate breast cancer patients’ survival outcomes, before and after the introduction of new adjuvant therapies. The project will utilise two patient groups: women diagnosed with breast cancer between 2001 and 2002 (before the introduction of the new treatments) and women diagnosed with breast cancer between 2006 and 2007 (after the introduction of the new treatments). Another objective is to identify other factors that contribute to survival outcomes, such as demographic variables (for example, remoteness and socioeconomic status).
A patient cohort will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.
Findings will inform treatment planning and enable healthcare professionals to enhance the care and management of women newly diagnosed with breast cancer and women with an existing diagnosis.
The Evaluation of biological markers of traumatic stress risk and resilience project, a collaboration between Australian and Canadian investigators, extends the analysis undertaken in two previous linkage projects: The Middle East Area of Operations (MEAO) Prospective Health Study (EC 2009/3/30) and the transition and Wellbeing Research Programme: Impact of Combat Study (EO 2015/1/161).
There are two components to the Evaluation of biological markers of traumatic stress risk and resilience project: extended serum testing and storage for use in later studies.
The objective of this study is to identify biomarkers of mental illness (for example, post-traumatic stress disorder (PTSD)), health risk and resilience, among current and ex-serving Australian Defence Force members.
Data will be linked with the National Death Index to identify deceased military personnel, so that study investigators can exclude them (and their families) from the consent process.
Findings will provide important information about specific biomarkers of PTSD, and resilience. Healthcare professionals will be able to better identify individuals who may be at risk of PTSD or an adverse reaction (and those who may not) after exposure to a potentially traumatic event. Findings will also enable healthcare professionals to better establish prognoses following treatment for PTSD.
The Victorian Cardiac Outcomes Registry (VCOR) is a Clinical Quality Registry (CQR), designed to monitor the quality of care of patients with specific cardiac conditions, or those undergoing cardiac procedures, in Victorian hospitals. It collects data about patients, aged 18 and above, who present with cardiovascular conditions (e.g., acute myocardial infarction and heart failure), and who receive one or more of the following procedures: percutaneous coronary intervention (e.g., coronary stents) and cardiac implantable electronic devices (e.g., pacemakers).
The VCOR also collects information about procedures undertaken at participating Victorian hospitals at both baseline and 30 days post-procedure. The registry currently contains approximately 35,000 patient records.
In order to establish VCOR patient survival outcomes, VCOR data will be linked with the National Death Index.
Study findings will update existing VCOR data. Healthcare professionals can use the study findings to improve cardiac patient outcomes by enhancing the quality of care, and reducing mortality rates.
Psychotic-spectrum disorders are highly prevalent in the community. They have been linked to marked psychosocial impairment and, in severe cases, mortality. Both historically, and currently, pharmaceutical interventions (e.g., antipsychotics and anti-depressants) have been the treatment of choice to manage the adverse psychological and physical effects of these disorders.
The study cohort consists of adult psychiatric inpatients, admitted to public hospitals in the Hunter Region, NSW, between 2000 and 2010. Data about the following areas: electrocardiograph morphology and discharge diagnosis will also be collected.
This study will determine if there is any association between antipsychotic or antidepressant drug use and an increased mortality rate. Specific objectives include:
Data will be linked with the National Death Index.
Findings will provide much-needed information about any associations between psychiatric medication use and mortality. Healthcare professionals can utilise this information to improve the management of psychiatric patients, and reduce mortality rates.
ASPREE (ASPirin in Reducing Events in the Elderly) is a large-scale, international, double-blind, randomised, placebo-controlled study, that investigates whether daily, low-dose aspirin (100 mg) extends life, free of physical and mental disability among healthy people aged 70 years and over. It is the largest clinical trial, of its kind, in Australia, and has recruited more than 16,500 participants, and registered more than 2,700 general practitioners as co-investigators.
A primary objective of the ASPREE study is to establish whether low-dose aspirin prolongs life, or life free of disability (both physical and mental) among the healthy elderly, over a five-year treatment period. A secondary objective is to determine the effect of low-dose aspirin on mortality rates among the elderly.
ASPREE study data will be linked with the National Death Index to identify deceased individuals, and the cause of death.
In Australia (and overseas), there has been a steady rise in life expectancy. In an ageing Australian population, which continues to grow, study findings will have significant implications for the care of the elderly (e.g., delaying the onset of chronic disease associated with ageing), and for meeting their unique health needs.
Myeloma, also known as multiple myeloma, is a type of bone marrow cancer. It is an incurable disease, arising from abnormal plasma cells in the bone marrow. Normal plasma cells produce antibodies to help fight infection. In myeloma, the plasma cells release only one type of antibody—paraprotein—that is ineffective against infection. Myeloma usually affects areas where bone marrow is normally active: bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. It is most common in those aged 60 years and older, with men affected more than women.
The Myeloma and Related Diseases Registry (MRDR) is a national registry, established to collect data about diagnosis, treatment and outcomes among patients with myeloma and related diseases.
In order to improve (and maintain) the accuracy of MRDR mortality data, MRDR data will be linked with the National Death Index on a continual basis.
The updated MRDR mortality data will enable healthcare professionals to improve survival rates for myeloma patients, through more accurate treatment evaluation, and more informed treatment planning and implementation.
HABITAT (How Areas in Brisbane Influence healTh And activity) is a multilevel, longitudinal study, that began in 2007, and which collects data about lifestyle, health and wellbeing, and the facilities and services available in local areas. It currently includes over 11,000 Brisbane residents from 200 neighbourhood areas.
The primary objective of the HABITAT study is to examine the effect of physical activity (and sedentary behaviour) on physical functioning over the lifespan, and the extent to which neighbourhood environment, socio-demographic, social and psychological factors contribute to physical activity (and sedentary behaviour).
HABITAT study data will be linked with the National Death Index to identify deceased participants, and to explore neighbourhood predictors of mortality and survival.
Study findings will inform health policies and initiatives, designed to prevent (or delay) the onset of physical function decline among the elderly. Furthermore, this will reduce demands placed on the healthcare system.
Transcatheter aortic valve implantation (TAVI), a minimally invasive procedure, is the primary treatment option for aortic stenosis, rather than surgical aortic valve replacement (SAVR), among high-risk patients. As the ageing population continues to increase in Australia, the prevalence of aortic stenosis is also expected to increase. Such a trend has occurred in many highly-developed countries, where the number of annual TAVI procedures has also increased.
There is currently a paucity of research about the long-term outcomes of TAVI patients, in Australia. For this reason, the RTOS (Royal Prince Alfred Hospital Transcatheter Aortic Valve Implantation Outcomes Study) was established.
The objectives of the RTOS are as follows:
Data will be linked with the National Death Index to obtain important mortality information for the TAVI patients in the study cohort.
Findings will have implications for improving the care of aortic stenosis patients, through the provision of cost-effective surgical procedures, designed to enhance survival outcomes.
This study is a continuation of the Concord Health and Ageing in Men Project (CHAMP), an epidemiological study that investigated the prevalence and burden of disease of various age-related impairments, including cognitive decline and dementia, incontinence, reduced mobility and functionality in older Australian men. Study participants are assessed at baseline, and then followed-up after two years, after five years and after eight years. The CHAMP commenced in 2005, initially collecting data from a cohort of 1,705 men aged 70 years and over.
This study will broaden the scope of data collected in the CHAMP by including data from a National Aged Care dataset and mortality data. The CHAMP cohort will be linked to the Pathways in Aged Care (PIAC) database and the National Death Index (NDI).
The PIAC will provide important data about aged care program utilisation, and the NDI will provide important mortality data about deceased CHAMP study participants.
Study findings will inform healthcare policy designed to improve the quality of life and functionality of older Australian men.
This study examines long-term health service usage and associated costs for cancer survivors in Queensland, according to time since diagnosis. This study has the following objectives:
The study cohort consists of approximately 475,000 individuals, diagnosed with cancer in Queensland (QLD) over the past 15–20 years. This data will be drawn from the QLD Cancer Registry.
Study cohort data will be linked to the National Death Index, the Australian Cancer Database, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will contribute to the development of economic models to estimate lifetime outcomes of cancer survivors, according to cancer type. A better understanding of cancer survivors’ long-term health trajectories will inform healthcare policy to improve quality of life, reduce the risks of further cancers developing and decrease mortality rates.
The prevalence of breast cancer and its burden of disease is well documented. It is currently one of the most prominent causes of mortality in women. Over the years, there have been significant advancements in evidence-bases for detecting breast cancers, particularly early detection, and treating breast cancers. Despite these medical advancements, breast cancer continues to be a leading cause of mortality.
This study will develop a large, population-based breast cancer database to investigate trends and differences in the prevalence and burden of disease, according to a multitude of variables including: demographic status (e.g., age, sex, remoteness, socioeconomic status); medical comorbidity; screening history and frequency; treatment utilisation and timeliness; survival rates.
The study cohort will consist of approximately 16,000 women, diagnosed with breast cancer from 01 January 2000 to the present, in South Australia (SA). Data will be drawn from the SA Cancer Registry.
Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will inform healthcare policy designed to improve the detection and treatment of breast cancer. Findings will also enable healthcare providers to reduce the burden of disease, and mortality rates, associated with breast cancer.
Cardiovascular disease (CVD) is the leading cause of death in Australia. Historically, lifestyle factors (e.g., poor diet, smoking, alcohol use and sedentary lifestyles) have accounted for differences in the prevalence and burden of disease of CVD. Despite significant advances, over the years, in the availability and quality of healthcare services, healthcare utilisation may also be an important factor.
This study investigates healthcare service use and costs of care associated with CVD. Specific aims of this study are:
The study cohort will consist of adult patients who had a cardiovascular event and presented to a Queensland hospital in 2010. Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Healthcare providers will use study findings to improve the management of patients with CVD, thereby reducing the associated burden of disease. Findings will also inform healthcare policy to enhance the availability and accessibility of healthcare services for individuals with CVD.
The Australian Taxation Office (ATO) has produced a de-identified longitudinal data collection using tax and superannuation information called the Australian Longitudinal Individual File (aLife). This is an enduring data collection (currently covering from 2000 to 2016) that will be used for social welfare and economic research, including intergenerational income mobility and household inequality. De-identified samples of aLife will be made available to ATO-approved external researchers through the Secure Unified Research Environment (SURE).
To facilitate intergenerational and household-level research, family groupings were derived in the aLife data collection using information held by the ATO.
To further enhance the accuracy of the aLife family groupings data from the aLife collection will be linked to the MBS in order to derive a flag to indicate groups of records relating to the same Medicare card. No identified information will be provided to the ATO.
This project will enable the ATO to undertake intergenerational public policy research, such as:
Study findings will improve the quality of public policy research, investigating welfare and economic issues affected by intergenerational income mobility and household inequality.
This study investigates the effectiveness of a model of primary healthcare designed to enhance accessibility to healthcare and reduce hospitalisation rates in Western Australian Aboriginal infants, aged less than three months. This study will also investigate the timing of Medicare enrolment, immunisation rates in the first six-months of life, and utilisation rates of routine child health checks.
Specific objectives are to determine if best practice levels in access to primary care can improve:
The WA Data Linkage Branch (WA DLB) will prepare a study cohort by drawing approximately 4,300 Aboriginal babies, born between October 2015 and April 2018, from the Western Australian Registry of Births, Deaths and Marriage. WA DLB will link the study cohort to hospital and emergency data.
The AIHW will link the study cohort to the Medicare Benefits Schedule and the Australian Immunisation Registry.
Study findings will inform health policies and practices, designed to enhance the health and well-being of Aboriginal and Torres Strait Islander people.
Medicating older patients, particularly those experiencing dementia and those approaching the end of their lifespan, poses significant challenges to healthcare professionals. Older patients are a highly vulnerable group due to an increased susceptibility to medication side effects, age-related cognitive decline and a tendency to present with multiple medical complaints. This last factor—comorbid medical conditions—often necessitates polypharmacy use to manage multiple symptoms and multiple side effects.
In recent years, a major limitation of polypharmacy use in older patients has been the unnecessary prescription (and use) of certain medications. For example, one in five medications prescribed to older patients has been unnecessary, even harmful.
This study investigates the prevalence of unnecessary, even inappropriate, polypharmacy use in hospitalised older patients. It also investigates the effectiveness of an intervention to reduce the incidence of inappropriate polypharmacy use in older patients.
This study will draw data from several NSW administrative health datasets:
The Centre for Health Record Linkage will link these datasets to prepare a study cohort. The AIHW will link the study cohort to the Pharmaceutical Benefits Scheme.
Study findings will inform an evidence-base regarding the prevalence and management of inappropriate polypharmacy in hospitalised older people. Findings will also inform health practice policies to reduce the incidence of inappropriate polypharmacy use in older people and adverse side effects. Healthcare professionals can use study findings to improve the care of older hospitalised patients.
The EAT—a randomised, controlled study collecting data from hospital patients in five states—examined the effectiveness of a psychological intervention to treat malnutrition (and any related psychological symptoms, such as depression and anxiety) in head and neck cancer patients undergoing radiotherapy. The EAT study found that the intervention was effective in enhancing nutritional status and quality of life, while reducing psychological symptoms.
Study investigators wish to establish survival outcomes of EAT study participants and, in particular, whether the intervention is effective in reducing mortality rates.
The EAT study will be linked to the National Death Index to examine survival outcomes and to identify important mortality data for any deceased participants.
Study findings will inform an evidence-base for the management of treatment side effects, such as malnutrition and psychological symptoms, in cancer patients undergoing radiotherapy. Healthcare professionals will use study findings to reduce psychological distress among cancer patients, thereby enhancing quality of life.
In Australia, stroke has become a national healthcare priority due to its burden of disease. The effects of a stroke are quite debilitating—not only for patients but also for their families. Strokes also place significant financial demands on the healthcare system.
Stroke survivors can still maintain quality of life, largely because of the availability of several treatments such as blood pressure lowering.
A recent approach—Chronic Disease Management (CDM)—encourages general practitioners to be actively involved in the management of chronic illness, including stroke.
This study investigates the effectiveness of CDM in the management of stroke.
A cohort of adult stroke patients will be linked to the National Death Index, Medicare Enrolments File, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme.
Study findings will provide important information about the effectiveness of CDM in reducing rates of reoccurrence and rehospitalisation among stroke survivors.
This study will examine mortality and morbidity outcomes in patients with psychotic illness. Data will be drawn from the National Survey of High Impact Psychosis (SHIP) study.
This study has the following aims:
SHIP cohort data will be linked to the National Death Index to establish survival outcomes and to obtain relevant mortality data.
Study findings will inform health policies designed to enhance the care and management of patients with psychotic illness.
Family violence victims experience significant psychological distress, such as depression, anxiety, substance abuse and, in severe cases, suicide. Victims also report prominent physical ailments such as cardiovascular and gastrointestinal complaints, and previous studies have found elevated use of health services and medication in family violence victims.
Conversely, little is known about the physical health complaints and psychological distress that family violence perpetrators may experience.
This study investigates health service use among victims and perpetrators of family violence. Family violence data (for approximately 6,000 individuals) will be drawn from Victorian Police records. The Victorian Data Linkage Unit will prepare a cohort by linking this data to the following Victorian data sources:
To obtain data about the use of healthcare services and medication, the AIHW will link the study cohort to the following Commonwealth datasets:
Study findings will inform improvements to existing police protocols designed to manage family violence incidents and the allocation of targeted community resources to manage family violence. Healthcare providers will use study findings to assist victims to manage the physical health and psychological consequences of family violence. In addition, where psychological distress is a risk factor for perpetrating family violence, findings will have implications for developing diversionary programmes to reduce family violence rates.
The Healthwise Cancer and Mortality Study is a longitudinal investigation of adverse, occupational health outcomes among workers at Alcoa, an Australian aluminium treatment and processing facility. The tendency for any adverse health outcomes—cancer and, in severe cases, mortality—to have a delayed onset has meant that extensive follow-up study is required to monitor the incidence over time.
This study extends the original work undertaken in the Healthwise Cancer and Mortality Study by establishing the incidence and prevalence of cancer and mortality, over time, among Alcoa workers. Specifically, this study will examine cancer incidence, according to primary site, and whether this incidence and any mortality are linked to occupational exposure.
The study cohort consists of approximately 12,500 Alcoa workers. Data will be linked to the National Death Index to identify any deceased individuals, and to the Australian Cancer Database to identify any individuals diagnosed with cancer. Several repeat linkages will be undertaken to monitor the incidence of cancer and mortality over time.
Study findings will inform an evidence-base about any relationships between occupational exposure and adverse health outcomes among Alcoa workers. Healthcare providers can use study findings to manage any risks of occupational exposure.
Idiopathic pulmonary fibrosis (IPF) is a debilitating condition which affects the lungs. Currently, no effective treatments are available, and life expectancy is usually between two and four years. In response to this poor prognosis, researchers developed and implemented the QUIET-IPF (Quality of LIfE and Costs AssociaTed with Idiopathic Pulmonary Fibrosis) study to quantify the health economic and quality of life burdens associated with IPF.
This linkage project will extend the QUIET-IPF study by examining survival outcomes and health service use among IPF patients. It will recruit study participants from the Australian IPF Registry. Data will be linked to the National Death Index.
Study findings will facilitate the development of an IPF health economics model to enable health economic evaluations of new treatments and interventions.
To facilitate the management of cancer patients, including the provision of treatment in accordance with best practice standards, the Prince of Wales Hospital developed the Head and Neck and Central Nervous System databases. Healthcare providers routinely use these databases to monitor patient progress, to ensure that all treatment is consistent with international standards, and, in the event of mortality, to establish whether this was related to a primary cancer or an unrelated medical condition.
This study aims to identify cause/s of death and survival time from the date of cancer treatment and whether treatment modifications are required to improve quality of life and survival.
Approximately 2,000 cancer patients received treatment at the Prince of Wales Hospital between 1967 and 2016.This cohort will be linked to the National Death Index to examine survival outcomes and to obtain mortality data for any deceased patients.
Study findings will inform protocols designed to enhance the care and management of cancer patients at the Prince of Wales Hospital to maximise quality of life, while reducing mortality rates.
Traumatic Brain Injury (TBI) is characterised by marked impairment and disability, and in severe cases can lead to death. Prognoses among TBI patients are poor and the World Health Organisation has forecasted that by 2030 TBI will be the third leading cause of disability.
The EPO-TBI study conducted between 2010 and 2015, is one of the few studies that examined the effect of erythropoietin on survival outcomes. Findings revealed lower mortality rates among TBI patients treated with erythropoietin, compared to those treated with a placebo. However, it is unclear whether this effect remains, even after several years following erythropoietin treatment.
This linkage study investigates survival outcomes in patients from the original EPO-TBI study. There were 226 living patients at the end of the original study.
Data will be linked to the National Death Index to identify deceased patients and to obtain the causes of death.
Study findings will contribute to the design of future randomised controlled trials for this highly debilitating condition.
Young-onset dementia (YOD), a neurological condition diagnosed before age 65 years, affects about 26,000 people in Australia. It usually occurs during middle-age—when many people are at the peak of their occupational functioning and income-earning capacity and/or are parenting children. People with YOD display marked impairment in a multitude of domains.
This study examines the cognitive, psychiatric and neurological effects of YOD. Primary healthcare providers will use study findings to identify YOD patients at risk of adverse health outcomes to improve their care and management.
Data will be linked to the National Death Index to investigate survival outcomes and to obtain relevant mortality data.
In Australia, about 90 per cent of new hepatitis C infections arise from unsafe injecting drug use. Healthcare providers have used various pharmaceutical interventions to treat hepatitis C infections.
To reduce the incidence of hepatitis C infection, the Australian Government listed direct acting antiviral (DAA) medications on the Pharmaceutical Benefits Scheme in March 2016. Studies have shown that DAAs have been highly efficacious in treating hepatitis C infection, with efficacy rates of 95 per cent.
In response to the high rates of injecting drug use, combined with the elevated rates of hepatitis C infection, the NSW Government implemented a surveillance system to monitor hepatitis C infection (and re-infection) rates in NSW residents receiving DAA medications.
This study examines rates of hepatitis C infection, following DAA medication use, particularly for NSW Aboriginal and Torres Strait Islander people for whom notification rates are eight-and-a-half times higher than for non-Indigenous Australian individuals.
Data will be linked to the Pharmaceutical Benefits Scheme, and also the National Death Index to identify deceased study participants to be excluded from the study. Study findings will inform health policies, designed to assist healthcare providers to treat patients with hepatitis C infection, reducing the associated burden of disease.
Children in out-of-home care have historically presented with marked levels of physical, mental and developmental impairment. The National Standards for Out-of-Home Care, a best-practice model, was established to identify developmental and psychological impairment in children and young people in out-of-home care in a timely manner to ensure that healthcare providers can implement targeted interventions accordingly. To evaluate the effectiveness of the National Standards, the Pathway to Good Health program was introduced to some regions in Victoria.
This study will establish the timeliness and the extent of healthcare service use in children, aged up to 13 years, who received out-of-home care in Victoria for at least three months between 01 April 2010 and 31 December 2015. This study will also examine the effectiveness of the National Standards and the Pathway to Good Health program.
To meet these study objectives, the Victorian Data Linkage Unit will prepare a cohort dataset by linking records from the Victorian Child Protection Client Record Information System (children and young people meeting the inclusion criteria will be drawn from this data source) to records from several Victorian administrative datasets.
The AIHW will link the study cohort to the Medicare Benefits Schedule to identify healthcare services utilised.
Study findings will inform policies and guidelines designed to meet the healthcare needs of children and young people in out-of-home care. Healthcare providers will use study findings to identify children and young people in out-of-home care, who are at the most risk of adverse health outcomes, and to ensure that these healthcare needs are met.
In Australia, healthcare professionals have used a number of Assisted Reproductive Technologies (ART), such as in-vitro fertilisation (IVF) and various ovulation-induction medications to facilitate pregnancies in many women incapable of natural conception.
In recent years, there has been an influx of novel types and applications of ART, such as intracytoplasmic sperm injection, extended embryo culture and rapid embryo freezing. Furthermore, there has been an increase in utilisation rates of these novel ART applications. Despite these increased utilisation rates, there is still no evidence-basis for the effectiveness of these applications and the impacts (if any) on infant’s and children’s health outcomes.
This study examines the impact of different fertility treatments on reproductive outcomes and infant’s and children’s health outcomes. In particular, this study investigates whether novel types and applications of ART are related to any adverse health outcomes in infants and children.
The NSW Centre for Record Linkage will prepare a study cohort (approximately 600,000 women who gave birth in NSW and ACT from 01 January 2009 to the present) by linking data from several NSW health administrative datasets. The AIHW will link the study cohort to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will inform a much-needed evidence-base for the effectiveness of novel types and applications of ART and other fertility treatments. Healthcare providers will use this evidence-base to guide and inform best-practice, fertility treatment decisions.
The Bilateral Agreements on Coordinated Care (the Bilateral Agreements) between the Commonwealth and jurisdictions are part of a national approach to improving health care coordination in Australia to fulfil expectations set by the Council of Australian Governments. The Bilateral Agreements include a broad range of coordinated care activities and projects that will be undertaken by the Commonwealth, states and territories. The Commonwealth’s key contribution to the Bilateral Agreements is the Health Care Home (HCH) model in primary care initiative.
The HCH trial is a common activity across all states and the Northern Territory. Two hundred general practices (GP) and Aboriginal Community Controlled Health Services (ACCHS) in ten Primary Health Networks (PHNs) in all states and the Northern Territory have agreed to recruit patients for the HCH trial. A linked dataset (the Bilaterals dataset) will be established to evaluate the HCH initiative involving the following datasets:
The dataset will include patients in the HCH trial as well a comparator sample of people from the trial areas but who were not in the trial.
The evaluation is being undertaken by the Commonwealth Department of Health. Consultants from Health Policy Analysis are leading the evaluation that also involves researchers from the University of NSW’s Centre for Big Data Research in Health, and the University of Technology’s Centre for Health Economics Research and Evaluation.
The key questions posed for the HCH evaluation are:
Study findings will inform a national evidence-base for the coordinated provision of healthcare services to patients with chronic and complex conditions in Australia. Furthermore, findings will inform health policies designed to facilitate the accessibility and availability of healthcare services within each of the jurisdictions.
This project seeks to develop a de-identified dataset containing data from several state and territory data sources, including: ACT Cancer Registry; NSW Cancer Registry; ACT and NSW Hospital Admissions; ACT and NSW Emergency Department Data Collections; BreastScreen NSW.
Data will also be drawn from the following Commonwealth data sources: National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).
The final, linked dataset will be used for various purposes, including:
Findings will contribute to improved clinical outcomes for ACT and NSW cancer patients.
Applicant: Queensland Health Approval valid until: 30 June 2018
The Australian Health Ministers’ Advisory Council (AHMAC), at the 2013 Closing the Gap Strategic Discussion, highlighted disparities in the incidence of cardiovascular complications and treatment utilisation between Indigenous and non-Indigenous individuals as a major health priority. The Better Cardiac Care for Aboriginal and Torres Strait Islander People project was established to address these disparities.
The objective of this study is to assess the continuum of cardiac care against clinical guidelines and best practice standards. The cohort consists of patients, of all ages, who were first hospitalised in Queensland, during the period 2010/2011 to 2014/2015, with a diagnosis of Ischaemic Heart Disease (IHD), Congestive Heart Failure (CHF), Stroke or Acute Rheumatic Fever/Rheumatic Heart Disease (ARF/RHD).
The study cohort will be linked with the National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).
Findings will inform health service planning to improve the availability and accessibility of treatment for Indigenous individuals with cardiovascular complications.
Australia’s rapidly increasing ageing population, particularly Centenarians, continues to place significant demands on the health system. This project—The Sydney Centenarian Study—a longitudinal investigation, seeks to identify genetic and environmental factors that contribute to quality of life among Sydney residents aged 95 years and over.
The objectives of this study include:
Data will be linked with the National Death Index (NDI).
Findings will inform health policy and initiatives designed to improve and maintain quality of life among elderly individuals.
Applicant: University of New South Wales Approval valid until: 01 July 2018
The Older Australian Twins Study (OATS) is a comprehensive study of ageing in 600 twins, older than 64 years, recruited through the Australian Twin Registry. A major focus of this investigation is cognitive decline, and establishing the role of genetic and environmental factors.
The OATS cohort will be linked with the National Death Index (NDI) to identify deceased individuals and their cause/s of death.
OATS findings will contribute to a greater understanding of the precursors of cognitive decline. This information can be used to inform early interventions and initiatives that may delay, or even prevent, the onset of cognitive deterioration.
Applicant: Southern Metropolitan Health/University of Western Australia Approval valid until: 31 December 2017
Among women, breast cancer is the most common type of cancer diagnosed. The majority of cases are hormone receptor positive. This study seeks to identify factors that may be linked to improved outcomes for women with hormone receptor positive breast cancer.
A study cohort, consisting of approximately 1,900 women registered on the Royal Perth Hospital Breast Unit Database, between 1994 and 2011, will be linked with the Pharmaceutical Benefits Schedule (PBS) to assess treatment adherence and concomitant prescription medication use.
Findings will contribute to the development of initiatives and interventions, designed to optimise outcomes.
The Sydney Memory and Ageing Study (SMAS) was initiated to investigate the prevalence of and progression of cognitive decline in elderly individuals.
The SMAS study cohort will be linked with the National Death Index (NDI) to identify deceased individuals, their age at death and cause/s of death.
Findings will inform policies and initiatives designed to enhance elderly Australians’ quality of life.
Applicant: University of Notre Dame Approval valid until: 28 February 2023
An objective of this study is to establish a database of individuals with pulmonary hypertension—a common, yet under-diagnosed condition characterised by high blood pressure between the heart and lungs. Both retrospective and prospective data will be collected from digital echo laboratories across Australia.
The Echo database will be linked with the National Death Index (NDI) as part of this study.
The database will facilitate the identification of individuals with pulmonary hypertension, and those at risk of this condition. This should allow health professionals to reduce the burden of disease, and enhance quality of life.
Applicant: Royal Adelaide Hospital Approval valid until: 01 March 2019
This study investigates post-surgery outcomes among patients with Cushing’s Disease—a condition characterised by excessive release of adrenocorticotropic hormone from the anterior pituitary gland.
A cohort will be drawn from national and state-based hospital record data. It will be linked with the National Death Index (NDI) to:
Findings will inform policies and practices designed to improve the management of Cushing’s Disease, and patients’ quality of life.
Applicant: NSW Treasury Approval valid until: 30 June 2021
This study seeks to examine life trajectories of young people, leaving out-of-home care (OOHC).
The study scope is individuals aged between 14 and 18 years, who exited OOHC from 1996/97 until the most recent financial year for which data are available.
The OOHC cohort will be linked with several Commonwealth data sources, including Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), Centrelink data, Vocational Education and Training, and Higher Education support.
Findings will facilitate the development of policy directions and services for young people after leaving OOHC.
Applicant: Cancer Council Victoria Approval valid until: 01 April 2026
The Melbourne Collaborative Cohort Study (MCCS) was a large, population-based investigation that prospectively examined known and putative risk factors for cancer and other common chronic disease.
This linkage project will link data from the Melbourne Collaborative Cohort Study (MCCS) with the National Death Index (NDI) and the Australian Cancer Database (ACD).
Findings will contribute to those of the MCCS by further consolidating existing initiatives and interventions that attempt to reduce the burden of disease posed by cancer and other chronic illness, and enhance quality of life.
Applicant: The George Institute for Global Health Approval valid until: 01 May 2024
The original SHARP study investigated the effectiveness of cholesterol-lowering treatment among pre-dialysis and dialysis patients. A key objective was to examine the time taken to reach the first occurrence of a major atherosclerotic event. The cholesterol-lowering medication reduced this time by 17 per cent. Despite this finding, gaps still exist in research on reducing the burden of morbidity and mortality associated with kidney disease.
The SHARP-ER study extends the follow-up of the original SHARP study by an additional five years. Using patient visits, telephone contact, hospital record review and linkage to national data registries, this extended follow-up will provide data regarding the long-term effects for patients with chronic kidney disease and end-stage kidney disease.
This project will link the SHARP cohort with the National Death Index (NDI) to obtain mortality data for those who have died since the final SHARP study visit in 2010 until the end of the SHARP-ER study (2015).
Findings in this study will identify the long-term effects of cholesterol-lowering treatment on chronic kidney disease. Health practitioners can use this information to improve medical care for patients with chronic kidney disease, thereby minimising the burden of disease, and enhancing quality of life.
Applicant: Cancer Council Victoria Approval valid until: 01 June 2020
This project investigates whether variables of inequality—socioeconomic status and distance to services—contribute to the incidence of, and survival from, colorectal cancer in Victoria.
Data from the Victorian Cancer Registry (VCR) will be linked with the National Bowel Cancer Screening Program (NBCSP).
Findings will lead to a greater understanding of factors that influence the variation in both risk and outcomes of colorectal cancer and help to better target interventions, thereby reducing the burden of disease.
Applicant: The Royal Children’s Hospital, Melbourne Approval valid until: 01 January 2020
This project is a retrospective review of outcomes following heart surgery performed on approximately 2,000 children, in particular surgery for atrioventricular septal defects (AVSD). The sample was drawn from paediatric centres in Melbourne, Sydney, Perth, Brisbane and Auckland, of children who had surgery from 1975 onwards.
This project investigates the long-term outcomes of AVSD surgery. It will also study risk factors for patient mortality, while attempting to highlight surgical techniques and interventions associated with improved survival.
The study cohort will be linked with the National Death Index (NDI) to obtain mortality data for deceased patients in the cohort.
Health practitioners can use study findings to enhance survival rates following AVSD surgery.
Applicant: The Doherty Institute Approval valid until: 31 March 2019
Viral hepatitis is now the leading cause of liver cancer, and liver transplants. The aim of this study is to identify individuals most at risk of living with, and suffering adverse outcomes from, viral hepatitis. Another objective is to determine the level of clinical engagement and treatment uptake among those diagnosed with this debilitating condition, and to establish the impact of service access in preventing complications arising from infection.
The study cohort consists of people in Victoria who were the subjects of notification for hepatitis B or C between 1997 and 2014 (approximately 90,000). This cohort will be sourced from the Victorian Public Health Events Surveillance System, and linked with the following data sources: Victorian Admitted Episodes Dataset (VAED); Victorian Emergency Minimum Dataset (VEMD); Victorian Cancer Registry (VCR); National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS)
Findings will contribute to the early identification of individuals at risk of viral hepatitis and assist health practitioners in implementing interventions to minimise this risk, as well as adverse outcomes that may result following onset of the condition.
Applicant: Royal Melbourne Hospital and The University of Melbourne Approval valid until: 01 July 2020
An aortic valve replacement (AVR) is the most commonly used technique to treat aortic valve disease, and prevent progression to heart failure and, in some cases, death. Prostheses, such as bioprostheses and mechanical valves, have historically been used as replacement valves. Bioprostheses have a functional capacity of approximately 15 years. Mechanical valves, on the other hand, despite being durable, require lifelong anticoagulation with medications such as Warfarin. Both bleeding and clotting complications have thus been linked to AVR with mechanical valves.
The Ross procedure—a more complex surgical technique—is an alternative approach that uses an individual’s pulmonary valve to replace the aortic valve; a homograft is fitted to replace the pulmonary valve. A prominent advantage of this procedure is that it results in an aortic valve that is living and capable of remodelling, and thus overcomes many of the limitations associated with both bioprosthetic and mechanical valves.
The objective of this study is to ascertain which of the available options for AVR—bioprostheses, mechanical valves, and the Ross procedure—are associated with the most optimal long-term survival outcomes.
A study cohort will be linked with the National Death Index (NDI) to obtain mortality data, which will be used as an index of long-term survival outcome.
The study findings could potentially improve survival for people with aortic valve disease.
Applicant: Murdoch Children’s Research Institute (MCRI) Approval valid until: 30 June 2018
A large body of research has investigated microbiological and immunological links between viruses and the development of Type I diabetes. Conversely, little is known about whether early vaccination has any impact on the incidence of diabetes in young children.
In Australia, the oral rotavirus vaccine (ORV) was introduced to the routine National Immunisation Program (NIP) for all infants born from 01 May 2007. As an extension of the NIP, a project was undertaken to ascertain whether early infant vaccination against the rotavirus had any impact on the incidence of diabetes in young children. This project sought to examine whether the incidence of Type I diabetes in young Australian children would have decreased in the five years following the introduction of the vaccine.
The present investigation, a retrospective case-control study, will link data from the National Diabetes Services Scheme (NDSS), between 01 July 2002 and 01 July 2012, with the Australian Childhood Immunisation Register (ACIR). Findings will establish whether rotavirus exposure is either a risk factor for, or a protective factor against, the onset of Type I diabetes in infant children, and help to reduce the burden of this disease among infants and their families.
Applicant: Princess Alexandra Hospital Approval valid until: 30 December 2017
This study assesses the efficacy of mammographic screening, among Queensland women.
It has the following objectives:
A study cohort will be obtained from the Queensland Oncology Repository (QOR), which comprises data from various sources, including the Queensland Cancer Registry and Deaths. The scope of the study cohort will be women, who were eligible for mammographic screening in 2000, drawn from the Queensland Electoral Commission.
Data from the study cohort will be linked with the Medicare Benefits Schedule (MBS) to establish attendance at breast cancer screening, and utilisation of related services, for women in the study cohort.
Findings will yield important information about the efficacy of mammographic screening in identifying women at risk of breast cancer, and those with existing tumours. This information can be used to progressively reduce rates of mortality associated with breast cancer among women.
Applicant: Murdoch Children's Research Institute Approval valid until: 01 November 2023
The Victorian Cerebral Palsy Register (VCPR) collects and compiles data about Victorian cerebral palsy patients.
VCPR data will be linked with the National Death Index to identify deceased patients.
Findings will further contribute to the existing body of knowledge about mortality, and causes of mortality, among cerebral palsy patients. This will assist healthcare professionals to improve the care of cerebral palsy patients.
Applicant: Edith Cowan University Approval valid until: 22 December 2017
This study investigates the effect of correctional education on re-imprisonment rates, welfare dependency, and employment outcomes. Another objective is to examine whether correctional education reduces the risk of premature mortality.
A prisoner and ex-prisoner cohort will be linked with the National Death Index.
Results will have implications for reducing re-offending (and re-imprisonment) through enhancing ex-prisoners' assimilation into the community.
Applicant: Garvan Institute of Medical Research Approval valid until: 03 September 2021
Prostate cancer is the second leading cause of mortality among Australian men. Healthcare professionals have sought to gain a better understanding of the underlying molecular mechanisms.
This study aims to compile a large tissue resource, and related database, to provide the foundation for further investigation of the genetic basis of prostate cancer. Specific study objectives include:
The study investigators seek mortality data to update patient records. A cohort will be linked with the National Death Index.
Study findings will enable healthcare professionals to target interventions more effectively, reducing mortality and improving quality of life.
Applicant: University of Newcastle Approval valid until: 01 February 2021
The growing incidence of cardiovascular disease has prompted healthcare professionals and policymakers to develop initiatives that reduce cardiovascular-related morbidity and mortality. One such initiative-the Australian Study for the Prevention through Immunisation of Cardiovascular Events (AUSPICE), a multi-centre clinical trial-investigates the effectiveness of the pneumococcal vaccine in reducing cardiovascular events.
As part of the AUSPICE study, data will be linked with the National Death Index, Australian Cancer Database, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule.
The potential of the pneumococcal vaccine to protect against cardiovascular disease is of public health significance. Findings will pose implications for reducing cardiovascular-related mortality.
Applicant: Griffith University Approval valid until: 31 December 2019
This study investigates mortality among young people who have had contact with the Queensland Youth Justice System. In particular, it will examine the incidence and causes of premature deaths. Specific objectives include:
A cohort containing individuals who had contact with the Queensland youth justice system between 1993 and 2014 will be linked with the National Death Index.
Study findings will inform policy and assist targeted interventions to reduce premature mortality among juvenile offenders. Furthermore, because young, Indigenous Australians are over-represented in the youth justice system, results will also assist policymakers and healthcare professionals to reduce the gap in life expectancy between Indigenous and non-Indigenous Australians.
Applicant: Cancer Council Victoria Approval valid until: 31 December 2017
Young adult cancer patients typically display low survival rates. Researchers have attributed this poor prognosis to a multitude of factors, including patient, disease and healthcare factors. It should be noted that the delivery of young adult cancer services is often fragmented. Patients may receive treatment at either paediatric or adult facilities.
In response to growing mortality rates among young adult cancer patients, this study seeks to identify the modifiable health-system factors and practices that influence survival.
Study findings will enable policymakers and healthcare professionals to improve survival rates for young adult cancer patients.
Applicant: University of New South Wales Approval valid until: 01 February 2018
This project is a population-based, case-control, family study of adults with gliomas-cancers of the brain or spine-and unaffected family members. It will examine the contribution of environmental, lifestyle and occupational factors, and genetic variables to the development of gliomas. This project will also investigate the relationship between these variables and survival rates.
As part of this project, a cohort of adult glioma patients, diagnosed between 2013 and 2016, and unaffected family members, will be linked with the National Death Index and the Australian Cancer Database.
Gliomas have poor prognoses. Furthermore, there have been no prior family-based, case-control studies of gliomas. Through identifying potential risk factors for the onset of gliomas, findings will enable researchers and healthcare professionals to enhance disease prognosis and, ideally, prevent disease onset.
Applicant: Sydney South West Area Health Service - Liverpool Approval valid until: 31 December 2026
Liverpool Hospital, in New South Wales, Australia, implemented a multidisciplinary cardiac meeting in 2008 to promote long-term survival outcomes of high-risk, cardiac patients.
This project-a retrospective, observational study-examines post-cardiac surgery mortality rates at one, three, five, seven, and ten years.
The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) maintain a database of cardiac surgical procedures, and outcomes in Australia, with data from 28 hospitals. This database will be linked with the National Death Index to obtain mortality data for patients who underwent cardiac surgery between 2008 and 2015.
Study findings will provide important information about survival outcomes following cardiac surgery. Healthcare professionals can use this information to improve the management of cardiac patients, thereby enhancing surgical prognoses.
Applicant: Flinders University Approval valid until: 31 December 2017
Motor vehicle accidents, either fatal or non-fatal, place a significant burden on the healthcare system, and impose substantial financial demands on insurance providers. Australia's road safety agencies have thus attempted to reduce the incidence of motor vehicle accidents through a multitude of safe-driving initiatives. For these agencies to continue to improve road safety, they require up-to-date, national data about motor vehicle accidents that result in either fatal or non-fatal injuries.
The purpose of this study is to inform road safety policies and initiatives through the provision of up-to-date, national data about motor vehicle accidents, and related mortality.
State and territory motor vehicle accident data, and hospital records will be linked with the National Death Index.
Study findings will contribute to the improvement of road safety, and reduced mortality by informing road safety initiatives and enhancing the effectiveness of existing measures.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until: 01 September 2017
The Baker IDI Heart and Diabetes Institute has maintained a database of various cardiovascular risk and protective factors for over 15,000 patients.
This project investigates the relationship between various cardiovascular risk factors and mortality-both cardiovascular-related mortality and non-cardiovascular-related mortality.
Healthcare professionals can utilise study findings to improve the detection of individuals at risk of cardiovascular events, reduce the incidence of such events by targeting risk factors, and prevent cardiovascular-related mortality.
Applicant: Princess Alexandra Hospital, Queensland Approval valid until: 10 July 2017
Systemic amyloidosis is a rare condition. It is characterised by abnormal protein deposits in organs and tissues, which can lead to organ dysfunction and, in severe cases, mortality. Due to the rarity of systemic amyloidosis, little is known about its epidemiology.
The purpose of this study is to establish the incidence and prevalence of systemic amyloidosis. Additional study objectives include:
Study data will be linked with the National Death Index.
Study findings will provide much-needed information about the incidence and prevalence of systemic amyloidosis. Healthcare professionals can use this information to improve detection and management.
Applicant: AHMAC’s National Health Information and Performance Principal Committee (NHIPPC) Approval valid until: 31 December 2018
This project brings together public hospital admitted patient and emergency department data from two jurisdictions, New South Wales and Victoria, with Medicare Benefits Scheme data, Pharmaceutical Benefits Scheme data and National Deaths Index data from 2010–11 to 2014–15.
These de-identified data are available to selected analysts nominated by the New South Wales Ministry of Health, the Victorian Agency for Health Information, the Australian Government Department of Health and the AIHW.
The data are used for analyses related to topics such as:
It is planned that the project will be evaluated in 2018 and a report of the evaluation provided to AHMAC in early 2019.
Applicant: Monash University Approval valid until: 31 December 2019
Chronic heart failure has been linked to poor quality of life and, in many cases, premature mortality. In response to the immense burden of disease posed by chronic heart failure, the Screen-HFL, a longitudinal study, was developed. This study examined the extent to which NT-proB-type Natriuretic Peptide (NT-proBNP), a blood-borne substance, was a risk factor for chronic heart failure.
The present study has the following objectives:
SCREEN-HF data will be linked with the National Death Index.
Findings will enhance the early detection of individuals at risk of chronic heart failure. Healthcare professionals can target interventions appropriately to improve quality of life and reduce premature mortality.
Applicant: University of Western Australia Approval valid until: 31 December 2022
A 2011 study found that the annual mortality rate among recently released Australian offenders was approximately 10 times higher than that of incarcerated offenders.
The present study will, for the first time, examine health-related predictors of mortality among ex-prisoners.
A study cohort will be linked with the National Death Index.
Findings will inform evidence-based interventions to reduce ex-prisoner mortality.
Applicant: Royal North Shore Hospital Approval valid until: 31 July 2021
This study investigates surgical outcomes among neck of femur fracture patients. A long-term objective is to predict risk of adverse outcomes. Researchers will use two online, peri-operative risk assessment tools-the NSQIP (National Surgical Quality Improvement Program, a US online risk calculator) and the SORT (Surgical Outcome Risk Tool, a UK-based instrument)-to meet this long-term objective. Researchers will also compare predicted morbidity and mortality with observed events.
A patient cohort will be linked with the National Death Index to obtain mortality data at 30-days post-surgery. Researchers will compare NDI mortality data with predicted mortality to establish the accuracy of the risk assessment tools.
Findings will inform the accuracy of the NSQIP and SORT. Findings will also facilitate the detection of patients at risk of post-operative complications. Healthcare professionals can target interventions to reduce the likelihood of post-surgical mortality, and other complications.
Applicant: Cancer Council Victoria Approval valid until: 31 December 2026
The Australian Breakthrough Cancer (ABC) study, an ongoing prospective investigation, aims to predict an individual's risk of cancer. The study examines the interaction between lifestyle and genomic factors, including the identification of genes involved in cancer formation.
ABC study data will be linked with the National Death Index (NDI) and Australian Cancer Database (ACD). NDI data will provide important mortality information; ACD data will identify those diagnosed with cancer.
Findings will facilitate early detection of cancer risk, targeted interventions and screening, and reduced mortality.
Applicant: Prince Charles Hospital/University of Queensland Approval valid until: 31 December 2017
Degenerative aortic valve stenosis (AS) is the most common form of valvular heart disease. In severe cases, it has been linked to premature mortality. Corrective surgery is the standard treatment for AS. This, however, may not be suitable for 25 to 50 per cent of cases, due to multiple co-morbidities. In these instances, health professionals can utilise an alternative intervention-Balloon Aortic Valvuloplasty (BAV)-as a palliative approach. BAV can also be utilised as a pre-treatment option for transcatheter aortic valve implantation (TAVI).
A paucity of research has examined the effectiveness of BAV. This study investigates the effectiveness of BAV as a palliative procedure, and its utility as a pre-treatment option for TAVI.
A BAV patient cohort will be linked with the National Death Index.
Findings will provide much-needed information about the effectiveness of BAV as a palliative procedure for patients with inoperable aortic stenosis.
Applicant: Diabetes Centre, Royal Prince Alfred Hospital Approval valid until: 01 June 2017
In recent years, adult obesity rates and, in particular, those in young adults have increased significantly. Obesity has been linked to adverse health outcomes-cardiovascular disease, type II diabetes and, in severe cases, mortality. Furthermore, type II diabetes is highly prevalent among young adults.
This study aims to identify clinical risk factors for mortality among young adult type II diabetes patients. Another objective is to determine whether these risk factors differ from those associated with mortality among adult type II diabetes patients, and type I diabetes patients.
In this study, the Royal Prince Alfred Hospital Diabetes Centre, in collaboration with the University of Sydney, wish to link their database-a register of over 31,000 patients-with the National Death Index.
Findings will enhance early identification of young adults at risk of type II diabetes. Healthcare professionals can target interventions to reduce adverse health complications, and improve quality of life.
Applicant: University of New South Wales Approval valid until: 20 January 2022
The HSA Biobank, an initiative of the South Eastern Sydney Local Health District and University of New South Wales, is an ongoing collection of tumour banking and health data. Approximately 2,500 participants from all cancer types have been recruited, with ongoing recruitment. Samples and data are usually made available to third party researchers for projects with approval from an accredited Human Research Ethics Committee.
HSA Biobank data will be linked with the National Death Index. This will enable researchers to examine important questions such as the association of specific clinical and molecular features of cancer on survival. Research of this nature improves the understanding of cancer aetiology, and markers of diagnosis and treatment outcomes.
Applicant: University of Melbourne Approval valid until: 01 December 2019
The Women's Healthy Ageing Project (WHAP) is a longitudinal, prospective study of the health and well-being of Australian women. The WHAP collects data about lifestyle, quality of life, social connectedness, and cognitive decline. A primary objective is to identify cardiovascular, cognitive and lifestyle risk factors for mortality. The WHAP initially followed a middle-aged cohort. These women are now aged over 70 years.
The WHAP cohort will be linked with the National Death Index to examine relationships between neurological functioning, lifestyle factors, cardiovascular disease, and mortality.
Findings will identify risk and protective factors for mortality. Healthcare professionals can utilise this information to promote healthy ageing among women.
Applicant: Department of Cardiology, Western Health, Victoria Approval valid until: 30 November 2017
Heart failure is a significant health concern. It is a prominent cause of mortality for children and adults and, in particular, the elderly. Western Health in Victoria, Australia established a cardio-geriatric unit to meet the health care needs of elderly heart failure patients. Within this unit, under a multidisciplinary care model, a cardiologist and geriatrician review patients' cardiovascular functioning. Patients also access additional cardiology services.
A Western Health patient cohort will be linked with the National Death Index. This will enable researchers to evaluate the effectiveness of interventions in reducing mortality among elderly heart failure patients.
Applicant: Royal Victorian Eye and Ear Hospital Approval valid until: 31 December 2017
Floppy Eyelid Syndrome (FES) is a rare condition resulting in sticky discharge and watering from the eye(s), droopiness of the upper eyelid(s) and, in some instances, reduced vision due to corneal damage. FES is strongly associated with Obstructive Sleep Apnoea, a debilitating condition linked to reduced life expectancy.
There are no published studies investigating life expectancy among FES patients. This study investigates premature mortality, and life expectancy, among FES patients. Data will be linked with the National Death Index.
Findings will have implications for enhancing FES patients' quality of life.
Applicant: University of South Australia Approval valid until: 31 December 2025
Joint replacements are one of the most common elective procedures in Australia. The Australian Orthopaedic Association (AOA) maintains the National Joint Replacement Registry (NJRR). This registry contains information about joint replacement procedures undertaken, including surgical outcomes such as revision surgery, and mortality. The AOR, through the NJRR aims, as its key objective, to identify factors that contribute to both poor and successful prognoses following joint replacement surgery.
AIHW previously linked the NJRR with the National Death Index. This linkage provided important information about deceased NJRR individuals.
As part of the current linkage, the NJRR will be linked with the Medicare Benefits Schedule and Pharmaceutical Benefits Schedule. The AOA will also access hospital data from state linkage units. Findings will enable the AOA to monitor a wider range of surgical outcomes. This will enable healthcare professionals to target interventions, enhance surgical outcomes, and reduce mortality.
Approximately 50,000 Australians suffer a stroke each year. STAND FIRM, a research initiative, was designed to assist General Practitioners to manage stroke-related risk factors, and reduce stroke prevalence. STAND FIRM has recruited 570 stroke patients, randomly allocated to receive either an individualised management plan or standard care.
The STAND FIRM cohort will be linked with the National Death Index, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule to meet the following objectives:
Findings will enable healthcare professionals to improve the management of stroke patients, and reduce the associated burden of disease.
Applicant: St Vincent's Hospital Melbourne Approval valid until 1 July 2016
Australia has one of the highest prevalence rates of Systemic Sclerosis (SSc) worldwide. SSc is arguably the most devastating of the rheumatological diseases, with a potential to irreparably damage multiple organ systems and shorten life expectancy by an average of two decades. Data linkage will be undertaken between the Australian Scleroderma Cohort Study, the Australian Cancer Database and the Medicare Benefits System to analyse the use of health services. This research will inform allocation of resources, with the ultimate goal of improving patient outcomes and reducing the financial and human costs of this complex chronic disease.
Applicant: Department of Veterans Affairs Approval valid until 31 December 2021
The purpose of this project is to generate a database (Study Roll) of contact and demographic information for potential serving and ex-serving participants in specific health research projects undertaken by the Department of Defence and Department of Veterans' Affairs. In particular, the Study Roll is intended to facilitate recruitment of participants, avoid duplication of data collection and reduce risk of survey fatigue, for two major research programmes commencing in 2015. The Roll will be kept by the AIHW, which will ensure the confidentiality of research participants is maintained.
Applicant: Australian Institute of Health and Welfare Approval valid until 31 December 2022
There has been ongoing community concern around the issue of suicide within the veteran community and, in particular, of veterans of more recent conflicts. However, there is a paucity of statistical evidence on suicide in the Australian veteran community.
The Department of Veterans Affairs (DVA) is generally only made aware of a veteran's suicide where a dependant lodges a claim after the death of a veteran. The Department of Defence (Defence) keep only active records of current employees and is only aware of a death (including suicide) where the member is a current employee. This leaves a large group of veterans about whom neither DVA nor Defence have any data.
The research involves linking ComSuper data to the National Death Index to obtain data and all causes of death to estimate the number and prevalence of suicide among the recorded deceased ADF personnel since 1990. This research will provide a better understanding of the prevalence of suicide in the wider veteran community.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until 31 December 2023
Risk prediction tools are commonly used to detect individuals at high risk of heart disease and stroke who may benefit from preventive treatment. However, current risk tools in Australia do not take into account the independent risk associated with a lower social economic status, resulting in reduced prioritisation of preventive treatment among individuals who need it most. This study proposes to use pooled Australian cohort data to develop an Australian risk prediction tool for identifying individuals at high risk of developing heart disease and stroke, which will include a measure of social deprivation. Improved assessment and intervention for disadvantaged Australians may reduce unnecessary cardiovascular events and premature deaths as a result of unfair and ineffective risk estimation, and thereby reduce disparities in cardiovascular disease within Australia.
This study does not involve further data linkage, but requires access to de-identified data already linked for the Australian and New Zealand Diabetes and Cancer Cohort (EC 2011/2/15).
Applicant: Royal Adelaide Hospital Approval valid until 8 March 2022
Approximately 50% of patients without a history of diabetes develop increased blood glucose concentrations when they are critically unwell in an intensive care unit (ICU). It is thought that this hyperglycaemia resolves completely as their condition improves. The researchers suspect that this episode of high blood glucose may identify a population that is at an increased risk of subsequently developing type 2 diabetes.
The aim of this project is to collate patient and hospital data (including blood glucose levels) from the four major public ICUs in South Australia for all patients admitted between 2004-2011 (~20,000 patients). Linkage of this data with the National Diabetes Service Scheme and National Death Index databases will be undertaken, which will allow the researchers to describe the incidence of subsequent diabetes in those patients with and without high blood sugar levels during their critical illness. If the results indicate that patients with high blood glucose levels more frequently develop diabetes after ICU then screening this group and/or consider targeted diabetes prevention programs will be suggested.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until 26 January 2025
The purpose of this study is to create a dataset of over a million people with diabetes with information on multiple outcomes (Alzheimer’s disease (AD) and end-stage kidney disease (ESKD), and mortality) that will be able to address the following aims:
Data linkage between the National Diabetes Service Scheme (NDSS) to the Pharmaceutical Benefits Scheme database (PBS), the Repatriation Pharmaceutical Benefits Scheme database (RPBS), the National Death Index (NDI), and the ANZDATA (Australia and New Zealand Dialysis and Transplant Registry) will be undertaken.
Applicant: Melbourne University Approval valid until 31 December 2022
People with diabetes are at risk of developing ocular complications which could lead to vision loss and blindness. About 75% of persons will have diabetic eye disease after 20 years. In order to avoid vision loss every person with diabetes should be screened regularly for ocular complications. Diabetic retinopathy (DR) screening is readily available in Australia, however severe vision loss due to complications can only be avoided if it is utilised. A recent pilot study conducted in Melbourne suggests that compliance for the National Health and Medical Research Council DR screening guidelines is very low. For example, NHMRC guidelines advise immediate referral for an eye screening upon diagnosis of diabetes type 2. However, the study found that the mean delay between diagnosis and first referral is three years and it is suspected that low compliance extends to the wider population.
Data linkage between the Medicare Benefit Scheme (MBS) and Pharmaceutical Benefit Scheme (PBS) will be undertaken to investigate referral practices, specifically the time delay between patients with a diagnosis for diabetes and subsequent consultation with an eye-care specialist.
Applicant: Northern Territory Department of Health Approval valid until 31 March 2015
Information on incidence and prevalence of Acute Myocardial Infarction (AMI) will improve understanding of the health status of NT Indigenous and non-Indigenous people and fills a much needed information gap in Cardiac service delivery and planning. This information will inform resource allocation and program evaluation, and support improved service delivery by providing:
The study will investigate the mortality, incidence and survival associated with AMI for people in the Northern Territory (NT) in the period 1992-2014. This includes constructing a study cohort from Hospital separations and deaths data from the local registry of births, deaths and marriages (BDM), and Coroner's data; the cohort will have the scope of all NT residents who have had an AMI (identified by hospital diagnosis or cause of death). Further data linkage of this cohort to the National Death Index will be undertaken to identify AMI patients who have died interstate and confirm local data.
From the linked data-set of all AMI patients and related deaths, the AMI incidence rates (including time trends) for the NT population and survival rates for NT AMI patients will be calculated.
Applicant: National Drug and Alcohol Research Centre (NDARK) Approval valid until 28 February 2025
The purpose of this project is to assess reasons for, and trends in, emergency department attendance and hospitalisation among people with opioid use disorders, and determine the impacts of opioid substitution therapy (e.g. methadone maintenance treatment) on these.
It is a retrospective, longitudinal data linkage study, using data from NSW opioid treatment, emergency department and hospital databases, and the National Death Index. As well as identifying the base cohort of people with opioid use disorders, the study will involve analysis of two matched comparison cohorts: one of people without opioid use disorders attending emergency departments (ED comparison cohort), and one of people without opioid use disorders who are hospitalised (hospital comparison cohort).
The aims of the project are to compare health service use of people with and without opioid use disorders; and to measure the impact of opioid substitution therapy on health service use, and associated costs of people with these disorders. In order to determine mortality and calculate time at risk for hospitalisation, data linkage will be undertaken to link the three study cohorts with the National Death Index to obtain date and all causes of death, and year and state/territory of death registration.
This project will contribute to an understanding of emergency department attendance and hospitalisation of people with opioid use disorders, and the potential impacts of opioid substitution therapy in reducing emergency department attendance and hospitalisation of this population. Findings will assist the estimation of costs associated with opioid use disorders, and development of a cost savings model of opioid substitution therapy.
Applicant: University of Adelaide Approval valid until 31 March 2032
The Impact of Combat Study is a follow-up study, which will enable comparison of health outcomes for a group already tested under the Military Health Outcomes Program (MilHOP) and serve as a time point in the longitudinal surveillance of the Middle East Area of Operations (MEAO) Prospective Study cohort. The MEAO Prospective Study was a Defence commissioned research project investigating the health of ADF members deployed to the MEAO between 2010 and 2012. The Impact of Combat Study aims to examine the longitudinal trajectory of, and risk and protective factors for, mental physical, and social health and wellbeing in this cohort.
In order to recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) having participated in any aspect of the Middle East Area of Operations (MEAO) Prospective Health Study, (b) having previously provided consent to be contacted for future research, and (c) still living (ascertained from linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website. Demographic data will also be provided for consenting participants to facilitate the study and for further analysis.
All eligible participants who completed a pre-deployment survey as part of the MEAO Prospective Study will be invited to complete a survey and participate in a structured diagnostic interview as part of the current investigation. Participants who were previously identified as having engaged in high-risk roles, and who underwent neurocognitive and/or biological testing as part of the MEAO Prospective Study, will also be invited to do so again. A further subgroup identified as having probable mild traumatic brain injury will in addition be targeted to undergo MRI testing.
This study has several benefits. Firstly, results will form the basis on an ongoing longitudinal study to identify trends in client needs and predictors of these trends. Secondly, the project will identify psychosocial factors that should be considered in treatment, as well as investigating barriers and pathways to care. Thirdly, the project will identify physical, mental health and cognitive factors that should be considered in treatment, as well as investigating barriers and pathways in a high-risk group. By understanding the impact of military service, deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.
The Mental Health and Wellbeing Transition Study will provide a comprehensive picture of the mental health and wellbeing status of contemporary veterans as well as particular subgroups within the Australian Defence Force (ADF). Additionally it will examine the trajectory of disorder and pathways to care for individuals previously diagnosed with a mental health disorder as part of the 2010 ADF Mental Health Prevalence and Wellbeing study (MHPWS). The 2010 ADF MHPWS was a Defence commissioned investigation of the prevalence of mental disorder among the entire ADF. To achieve the aims of the Mental Health and Wellbeing Transition Study, five overlapping cohorts will be targeted for survey data collection. These are:
To recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) a member of one of the above five cohorts; (b) either not having participated in previous research, or else having participated previously and provided consent to be contacted for future research; and (c) still living (after linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website. CTSS also requests demographic data for consenters to facilitate the study and for further analysis.
The study aims to analyse the physical health status of current and ex-service ADF personnel, to determine the prevalence of mental health disorders among transitioning ADF members, to assess pathways to care for these groups and to examine the factors that contribute to the current wellbeing of currently-serving and ex-serving ADF personnel.
The study involves a questionnaire, interview and, for a sub group of participants, neurocognitive tests.
A critical period in optimising the health of ex-ADF personnel is in the first two years following discharge from service due to the need to re-establish/connect with helpful providers in the civilian sector. Unfortunately, the civilian sector often has little understanding of the relevance or nature of ADF service, leaving ex-serving ADF personnel in a vulnerable position. It is hoped that this study will create community awareness among health professionals about the particular group and the importance of identifying those who have previously worked in the military. By understanding the impact of military service deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.
Applicant: University of New South Wales Approval valid until: 22 May 2019
Past studies have found that early, adverse experiences predict poor, developmental outcomes among Indigenous and non-Indigenous Australian children.
This study attempts to:
A study cohort will be drawn from the Seeding Success cohort-a large, linked dataset that contains data from multiple sources including: Australian Early Development Census; NSW Perinatal Data Collection; NSW Emergency Department Data Collection; NSW Register of Congenital Conditions; NSW Mental Health Ambulatory Data Collection.
The study cohort will be linked with the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Centrelink Income Assistance Data for Family Tax Benefit A (FTBA).
Findings will inform health initiatives to maximise developmental trajectories for Indigenous and non-Indigenous children.
Applicant: Royal Perth Hospital Approval valid until: 30 December 2016
Studies have investigated mortality rates among epilepsy patients (those with histories of two or more seizures). Mortality rates of patients with a first-ever seizure (those with a history of a single seizure), however, have been under-investigated.
This study aims to identify mortality rates of patients with first-ever seizures, and compare these to the general population.
It will draw a cohort from the Royal Perth Hospital (RPH) First Seizure database, a collection comprising approximately 1,500 patients who attended the RPH First Seizure Clinic since 2000.
To enable comparison of mortality rates between individuals with a first-ever seizure and the general population, a control group will be randomly selected from the electoral roll, and birth records, in Western Australia.
Both cohorts will be linked with the National Death Index (NDI).
Health practitioners can use study findings to better meet the needs of first-ever seizure patients.
Applicant: NSW Ministry of Health Approval valid until: 20 July 2016
The Better Cardiac Care project, a national health initiative, designed to improve the cardiac health of Indigenous Australians, was developed in response to disparities in cardiac care between Indigenous and non-Indigenous individuals.
Key priorities include: early cardiovascular risk assessment and management; timely diagnosis of heart disease and heart failure; guideline-based therapy for acute coronary syndrome.
This study will address these priorities by linking data with ACT and NSW emergency department data, National Death Index (NDI) and Medicare Benefits Schedule (MBS).
Findings will contribute to the improvement of the delivery of health services, equity of access, and the care and management of Indigenous and non-Indigenous patients with cardiovascular conditions.
Applicant: Monash University Approval valid until: 31 March 2017
Australia's ageing population has contributed to an increasing number of premature deaths from preventable causes (e.g., injuries from falls).
This study will link data from the National Death Index (NDI) with the Aged Care Funding Instrument (ACFI), a tool that assesses the level of care required by people in aged care.
Findings will identify risk factors for premature deaths among elderly Australians.
Applicant: Woolcock Institute of Medical Research Approval valid until: 31 December 2022
Respiratory complications are a major burden of disease, and a leading cause of mortality.
This study is a longitudinal investigation of 541 adults, randomly selected from the electoral roll, whose lung functioning and risk of developing lung disease was assessed.
An objective is to identify risk factors for the development of lung disease.
This study will link a cohort with the National Death Index (NDI) to identify respiratory disease-specific mortality.
Applicant: St Vincent's Hospital Melbourne Approval: 01 July 2016
This study investigates the burden of disease associated with systemic sclerosis (SSc), a highly debilitating rheumatological disease.
Australian Scleroderma Cohort Study (ASCS) data will be linked with hospital and ambulatory care data, and the Australian Cancer Database (ACD).
Data will also be drawn from the Medicare Benefits Schedule (MBS) to establish the number and type of ambulatory health services utilised by patients in the ASCS dataset.
Data from the ASCS will also be linked, via state linkage nodes, with SA, WA and TAS Hospital and Emergency Department data.
Findings will be used to improve outcomes for SSc patients, and reduce the associated burden of disease.
Applicant: Cancer Council NSW Approval: 01 June 2020
The NSW Prostate Cancer Care and Outcomes Study (PCOS) investigated prostate cancer patients' survival experiences.
The current study-the PCOS15-is a follow-up investigation that will analyse and model prostate cancer patients' survival experiences.
The PCOS cohort will be linked with the National Death Index (NDI) to obtain mortality information for deceased patients.
Findings will identify prostate cancer patients at risk of poor outcomes (e.g., treatment side-effects and early mortality), and inform care and management policies.
Applicant: The Canberra Hospital Approval: 01 September 2016
Australia's rapidly ageing population continues to place substantial demands on hospital resources. There has been a rise in the number of general hospital admissions and, in particular, ICU admissions for elderly patients.
Studies have investigated health outcomes of patients, aged over 80 years, and who are admitted to ICU. However, little is known about the outcomes of those patients who are declined ICU admission because they are either too well or too sick.
This study draws data from an intensive care referral database. It will be linked with the National Death Index (NDI).
Findings should improve the match between elderly patients' treatment needs and ICU resources.
Applicant: Melbourne University Approval: 30 June 2020
This project investigates risk factors, comorbidity, and premature mortality among epilepsy patients. It will identify prevalence and risk of, neoplasms, and patterns of anticonvulsant drug use.
The study cohort will consist of a community-based cohort, drawn from the Tasmanian Epilepsy Register (TER) and a hospital outpatient sample, which will be sourced from the St. Vincent's Hospital Epilepsy Clinical Database (SVHECD).
The cohort will be linked with the National Death Index (NDI), Australian Cancer Database (ACD), and Pharmaceutical Benefits Schedule (PBS).
Findings will enable researchers to identify specific epilepsy-related factors that may contribute to premature mortality and somatic comorbidity.
Applicant: University of Sydney Approval: 30 September 2019
This study uses a cohort drawn from the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry.
The ANZDATA Registry contains records of Australian and New Zealand patients with End Stage Kidney Disease (ESKD), who are receiving dialysis treatment or who have had a kidney transplant.
This study will examine changes in mortality rates and cause of death among ESKD patients, compared to the general population. It will also analyse the effect of different treatment modalities on mortality rates.
The ANZDATA Registry will be linked with the National Death Index (NDI). The Living Donor Kidney Registry-a kidney donor registry-will also be linked with the NDI.
Findings will pose implications for the treatment and management of ESKD.
Applicant: University of New South Wales Approval: 31 December 2017
This study assesses the health outcomes and service utilisation of a population cohort (N = 55,000) of injecting drug users and sex workers.
The population cohort will be linked with National HIV and AIDS Registries, the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Schedule (PBS).
Findings will guide and inform health outcomes for this particularly vulnerable population cohort.
Applicant: Swinburne University Approval: 31 December 2018
This study examines child sexual abuse survivors' developmental trajectories.
A database of child sexual abuse victims, which the Victorian Institute of Forensic Medicine (VIFM) collated between 1964 and 1994, and a control group drawn from the Australian Electoral Commission (AEC) will be linked with the Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), and the National Death Index (NDI).
Findings will inform health policies, designed to assist survivors of child sexual abuse.
Applicant: Baker IDI Heart and Diabetes Institute Approval: 01 August 2019
In 2011, a study was undertaken to establish cancer prevalence and mortality rates among diabetes patients, compared to the general population. This study linked the National Diabetes Service Scheme (NDSS) with both the Australian Cancer Database (ACD) and the National Death Index (NDI).
The current investigation will analyse this linked dataset to obtain mortality estimates and life expectancy among diabetes patients, compared to the general population. The study will also examine the effect of disability on life expectancy.
Health professionals can use study findings to enhance quality of life among diabetes patients.
Applicant: ANZDATA Registry Approval: 01 October 2017
The ANZDATA Registry contains records of Australian and New Zealand End Stage Kidney Disease (ESKD) patients, who are receiving dialysis treatment or who have had a kidney transplant.
As part of the CELESTIAL study, ANZDATA records were linked with the National Death Index (NDI).
The current study will use CELESTIAL study findings to compare NDI and ANZDATA cause of death codes, as the latter contains different cause of death categories.
Findings should enable health professionals to promote and maintain ESKD patients' quality of life, through a better understanding of ESKD mortality.
Applicant: Cancer Council Victoria Approval: 01 January 2026
This study aims to identify modifiable risk factors for prostate cancer, such as cigarette smoking, body mass index, and diet.
Epidemiological data will be linked with the National Death Index (NDI).
Findings will provide much needed information about risk factors for prostate cancer. Health professionals can use this information to enhance quality of life among prostate cancer patients.
Applicant: Curtin University Approval: 01 November 2018
This study examines the influence of primary care contact on emergency department visits.
A study cohort will be linked with WA Hospital and Emergency Department data, the Medicare Benefits Schedule (MBS), and the National Death Index (NDI).
Applicant: Menzies School of Health Research Approval: 01 July 2022
Cardiovascular disease is a leading cause of mortality among Indigenous Australians.
This study will investigate cardiovascular disease mortality rates among Indigenous Australians. A cohort of Indigenous individuals and non-Indigenous controls will be linked with the National Death Index (NDI).
Findings will improve the detection and management of cardiovascular disease among Indigenous Australians.
Applicant: University of Newcastle Approval: 31 December 2017
This study examines cancer survivors' and their support persons' preferences for various forms of care (e.g., psychosocial care, peer support, caregiver roles). Another aim is to assess the extent to which demographic characteristics (e.g., sex, age and cancer type) account for different preferences between patients and their support persons.
Findings will guide health care policy, and lead to improvements in cancer survivors' quality of life.
Applicant: University of South Australia Approval: 31 December 2019
This study will examine reported pain and analgesic medication use, before and after joint replacement surgery.
It will also identify patient subgroups, using analgesic medication ineffectively or inappropriately.
Findings will assist health professionals to improve the care of patients who undergo joint replacement surgery.
Applicant: University of Melbourne Approval: 02 April 2018
This project studies risk factors for premature mortality among patients, recently diagnosed with epilepsy. Specific objectives include:
A study cohort of patients with new-onset epilepsy will be linked with the Pharmaceutical Benefits Schedule (PBS), National Death Index (NDI), and the Australian Cancer Database (ACD).
Findings will assist in identifying patterns of high-risk anti-epileptic drug use, and related health complications.
Applicant: Victorian Department of Health and Human Services Approval: 31 December 2028
The Victorian Department of Health and Human Services commissioned a study to examine Latrobe Valley residents' health outcomes, following exposure to smoke from the 2014 Hazelwood coal mine fire.
The current study aims to provide new evidence about the relative importance of the severity and timing of air pollution exposure on a range of perinatal and child health, and developmental outcomes
The Victorian Department of Health and Human Services will link a study cohort with several Victorian health data sources. AIHW will then link the data with the National Death Index (NDI) and Medicare Benefits Schedule (MBS).
Findings will inform the development of evidence-based guidelines for managing air pollution events, and minimising health risks for pregnant women, unborn babies and infants.
Applicant: Australian National University Approval: 30 June 2017
Between the late 1960s and 1979, houses in the ACT and southern NSW were insulated with loose-fill asbestos. Despite remediation, asbestos was still found in many houses, years later.
In recent years, the number of people reporting exposure to asbestos, and subsequent health complications, has risen. Despite this, little is known about the long-term health effects of living in houses containing loose-fill asbestos.
This study aims to:
Study cohort data and controls from the ACT resident population will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).
Findings should provide much needed information about health complications arising from exposure to loose-fill asbestos.
Applicant: University of New South Wales Approval: 30 June 2019
There are a number of pharmaceutical interventions to assist individuals to cease smoking (e.g., bupropion, varenicline and nicotine replacement therapy). Some interventions have, unfortunately, been linked to adverse events such as cardiovascular disease, depression, seizures and, in severe cases, suicide.
This study examines whether the use of smoking cessation pharmaceutical interventions is associated with an elevated risk of cardiovascular disease, adverse psychiatric outcomes, and seizures.
A study cohort will be linked with the Pharmaceutical Benefits Schedule (PBS) and the Medicare Benefits Schedule (MBS).
Findings will determine whether smoking cessation pharmaceutical interventions are, in fact, linked to adverse health outcomes.
Applicant: ACT Health Approval: 30 June 2017
The ACT Cancer Registry was established in 1982. It is a population-based registry of individuals, diagnosed with cancer in the ACT.
This study links the ACT Cancer Registry to the National Death Index (NDI). It will identify individuals who were diagnosed with cancer in the ACT, but who may have died interstate.
The linked dataset will be used to conduct an up-to-date cancer relative survival analysis of ACT residents, and examine survival trends over time.
The results will be important for monitoring progress towards early diagnosis, and contributing to the effective treatment and management of ACT cancer patients.
Applicant: Telethon Kids Institute Approval: 31 December 2017
In Australia, the number of invitro fertilisation (IVF) births continues to increase. At the same time, new IVF practices (e.g., extended embryo culture, rapid embryo freezing) have been implemented. However, little is known about the effects of these on developmental outcomes, if any.
This study will establish whether changes in IVF practices are linked to adverse developmental outcomes.
Western Australia (WA) is the only Australian jurisdiction to have a register of individuals who have received IVF treatment. This study will link this register with the Pharmaceutical Benefits Schedule (PBS) and WA health administrative datasets.
Health professionals can use findings to enhance post-IVF developmental outcomes.
Applicant: The Kirby Institute (University of New South Wales) Approval: 01 December 2020
This study attempts to establish an annual, prospective population-based program for monitoring morbidity and mortality among individuals diagnosed with hepatitis B and/or hepatitis C.
A study cohort will be linked with the National Death Index (NDI), Pharmaceutical Drugs of Addiction System (PHDAS), and the Pharmaceutical Benefits Schedule (PBS).
The study will evaluate trends and identify populations at increased risk of hepatitis-related morbidity and mortality.
Findings will inform policies designed to reduce the risk and burden of hepatitis B and/or hepatitis C.
Applicant: Monash University Approval: 02 December 2025
From February to March 2014, a fire took place at the Hazelwood Power Station, in Victoria. There was community concern about potential health complications, following exposure to the smoke. The Hazelwood Adult Survey and Health Linkage Study was established to investigate any links between exposure to smoke and health complications.
The objective of this linkage study is to examine short-, medium- and long-term health effects following exposure to smoke from the Hazelwood Power Station fire.
A study cohort from Morwell and the comparison community of Sale will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).
Findings will inform the development of strategies to manage adverse health outcomes following exposure to smoke from the Hazelwood fire.
Applicant: Victorian Department of Health and Human Services Approval: 01 November 2020
The Cancer Pathways Study-a collaboration between the Victorian Department of Health and Human Services and the Commonwealth Department of Health- examines clinical pathways for cancer patients.
The objectives of this study are:
The study cohort consists of between 50,000 and 55,000 Victorian patients diagnosed with colorectal and/or breast cancer.
AIHW will link the study cohort with the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Schedule (PBS).
Findings will provide information about treatment and care trajectories among cancer patients. Health professionals and policymakers can use this information to improve existing care programs by maximising availability and accessibility.
Applicant: Geelong Hospital Approval valid until 31 December 2016
Critical care treatment of patients can at times be limited in its ability to improve mortality outcomes and in some situations can lead to a death that is more burdensome on patients, families and resources. Although there are guidelines in place to assess whether a patient's condition warrants critical care, no research has been done to examine the implementation of these guidelines and subsequent outcomes. Appropriate information in this area can potentially optimise hospital resource usage and improve better end of life care.
The aim of this study is to describe the number, characteristics, interventions, and outcomes of patients that meet criteria for treatment limitation yet are referred to a tertiary critical care service. The study aims to describe the care of these patients after referral, their outcomes, and if they do not survive, collect information about their end-of-life care.
Linkage of 1,200 records to the NDI will be undertaken in order to obtain date of death, cause of death and state/territory of registration.
Applicant: Menzies School of Health Research Approval valid until 30 June 2022
The NT has the highest rate of suicide and deliberate self-harm of any jurisdiction in Australia, especially amongst its Aboriginal residents. This research aims to create an important part of the evidence base needed to inform suicide prevention strategies in the NT.
This study will describe the characteristics, morbidity and mortality outcomes of those who attended a hospital in the NT for deliberate self-harm (DSH) (ie attempted suicide or intentional self harm) between 2000 and 2012, inclusive. It will also incorporate an analysis of health service utilisation of such cases for Aboriginal people, in order to better identify opportunities and strategies for prevention in this high-risk group.
Linkage with the National Death Index will be undertaken to obtain date of death, year of death registration, state/territory of death registration, cause of death code and codes of other causes of death.
The study comprises two main components, referred to as Stage 1 and Stage 2. Stage 1 is an analysis of hospitalisations in the NT for DSH and their outcomes between 2000 and 2012. Stage 2 is an analysis of the patterns of health service utilisation of the Indigenous cases from the study population identified in Stage 1.
Applicant: Canberra Hospital Approval valid until 30 October 2020
The cardiology department at the Canberra Hospital compiles a database of patients who have undergone coronary angioplasty and stenting procedures. The database is used for monitoring the effectiveness and the incidence of adverse events during long term follow up of patients after PCI/stent procedures. Linkage of the database to the NDI will be undertaken to obtain fact of death and date of death to improve the accuracy of the follow up information contained in this database.
Applicant: Westmead Hospital Approval valid until 31 March 2015
Dialysis patients generally have an abnormally elevated level of phosphate in the blood (hyperphosphemia) as a result of chronic renal failure, and this can lead to a number of complications. Phosphate binders are a group of medications used to reduce the absorption of phosphate and are used almost universally in the dialysis patient population. There are a number of different classes of phosphate binders. There is some evidence that the traditional and widely used non calcium-based phosphate binders have an increased risk of mortality due to cardiovascular disease, as compared to the newer, but more expensive, non-calcium phosphate binders.
This project is a national, retrospective cohort study that aims to compare the effects on survival of the displacement of calcium-based phosphate binders by the newer non calcium-based phosphate binding agents, sevelamer and lanthanum, in patients on dialysis. The study has the capacity to establish whether these costly agents provide patient-level benefits to Australians on dialysis in a real life situation, and inform the selection of phosphate binding drugs that could improve patient survival. The study will examine the mechanisms that result in the poor survival and high cardiovascular mortality of patients on dialysis.
The AIHW, acting as the integrating authority will undertake linkage with the adult Australian dialysis patient data stored in the ANZDATA registry to the Pharmaceutical Benefits Scheme (PBS) to obtain prescription data for both classes of phosphate binders from 2002 onwards. (sevelamar and lanthanum were PBS listed in 2007-08), as well as other drugs used in treating side effects and comorbidities in dialysis patients
Applicant: Translational Research Institute Approval valid until 31 December 2014
Patients with Rheumatoid Arthritis (RA) have increased morbidity and mortality from premature cardiovascular disease (CVD). Up to 50% of this excess mortality is secondary to ischaemic heart disease in the standardised mortality ratio due to CV events compared to the general population. The fact that premature CVD causes a significant health burden to RA patients necessitates the development of guidelines advising on how this increased CV should be identified and managed. Due to scarcity of long-term CV outcome data from RA patients, much of the guidance available has been extrapolated from CV studies performed in the general population. This project is a 10 year follow up.
Linkage with the National Death Index will be undertaken to determine cause and date of death, as some patients may have died in another hospital or at home and their death not recorded in their hospital notes.
Applicant: University of Melbourne Approval valid until 31 December 2020
Ten to Men is Australia's first nationwide longitudinal study of male health and is funded by the Commonwealth Department of Health. Participants will complete a questionnaire about their health status, social and environmental determinants of health and health-related behaviours including health service use. Data collection for the baseline wave of the study will commence in September 2013. The project aims to provide information on the determinants of male health and wellbeing aimed at building an evidence base to inform policy and programs to address health inequities between men and women and different groups of Australian males (e.g., males living in regional areas compared to capital city areas). Annual linkage to the National Death Index will be undertaken to obtain date and cause of death.
Applicant: Austin Health Approval valid until 30 November 2016
Chronic heart failure (CHF) is associated with high mortality and morbidity rates. Several treatments for CHF have resulted in hospital admission reductions and improvements in survival and quality of life. This project is an update to the Austin Health Heart Function Clinic mortality audit first carried out in 2006. The project aims to determine the mortality rate, analyse the relationships between cause of death, the underlying desease process and heart function therapies and to optimise patient care. Demographic, clinical and mortality data will be analysed to compare survival in patients as a function of different HF management strategies and the relative significance of specific therapies.
Linkage with the National Death Index (NDI) will be undertaken to determine fact and date of death, all causes of death and state of death registration.
Applicant: University of New South Wales Approval valid until 31 December 2016
This project is a retrospective epidemiological sample cohort study of hospitalised child injury in Australia. The burden and causes of paediatric injury by injury severity are not clear, and a more accurate snapshot of the incidence and characteristics of severe injury and related follow-up care are needed. The aim of the research is to estimate and describe the burden of hospitalised childhood injury and related follow-up care; to determine the severity of the injuries experienced and factors influencing survival. The research will better inform injury prevention strategies, research priorities, trauma system design, health service planning and resource needs for injured children in Australia.
Linkage between the State and Territory Hospital data to the National Death Index (NDI) will be undertaken to obtain date and all causes of death, calculated age at death and month, year and state/territory of registration.
Applicant: Monash University Approval valid until 1 January 2018
The primary objective of this project is to establish a massive transfusion registry in Australia and New Zealand to collect fundamental data on transfusion practice and patient outcomes in the setting of critical bleeding (CB) and massive transfusion (MT). The Massive Transfusion Registry (MTR) collects information on patients who have experienced serious blood loss that required a large replacement of blood (i.e. massive transfusion).
Ongoing linkage will be undertaken to obtain the fact, date and cause of death for each identified patient from the National Death Index to analyse survival rates.
Applicant: Repatriation General Hospital Approval valid until 1 December 2015
Treatment of prostate cancer is a health priority for the Australian community. Prostate cancer is diagnosed in 1 in 5 men who reach the age of 85 years and a large number of treatment options are available. One of these options is androgen deprivation therapy. Androgen deprivation therapy is currently recommended for patients with advanced prostate cancer.
This treatment may have side effects such as osteoporosis, heart attacks, stroke, diabetes, loss of muscle mass and depression. At present there are no clear guidelines as to how these medications can be given to patients in such a way as to maximize survival and minimise side effects.
Applicant: Burnet Institute Approval valid until 30 September 2018
This study is intended to provide insights into the complex relationships between incarceration, drug use, physical/mental health, service access and reoffending/recidivism. This is a longitudinal study where prisoners pending release from Victorian prisons will be interviewed and blood samples collected shortly prior to release, with follow-up interviews conducted at three, twelve and twenty four months post-release. These data will be supported by extensive record linkage with health (Medicare, justice health, hospitalisation, emergency department presentations, ambulance attendances, mental health, drug dependence treatment) and criminal justice (Victoria Police, Corrections Victoria, Justice Health) databases and paper records where appropriate. Findings will aim to inform policy and services for this high-risk population and help prevent morbidity and recidivism
Linkage with the National Death Index will also be undertaken to establish if people in the study have died and their causes of death.
Applicant: NT Department of Health Approval valid until 31 December 2018
The primary objective of this project is to investigate the survival rates and mortality trends of rheumatic heart disease (RHD) patients over time and to validate the causes of death recorded in the RHD register by performing data-linkage to the National Death Index every 3 to 5 years. The secondary objective is to investigate the survival rates and mortality trend of serious complications in RHD patients, specifically stroke, endocarditis, atrial fibrillation and heart failure.
Comorbidity and Trauma Study (CATS) (EO 2014/1/81)
Applicant: National Drug and Alcohol Research Centre Approval valid until 31 December 2021
The aim of this study is to examine the role, causes and predictors of mortality and patterns of engagement with participants on Opoid Substitution Therapy. Data linkage between the NSW Pharmaceutical Drugs of Addiction System and the National Death Index will be undertaken.
Applicant: Australian Cystic Fibrosis Data Registry Approval valid until 31 March 2021
Cystic Fibrosis Australia operates the Australian Cystic Fibrosis Data Registry (ACFDR) in collaboration with the Directors of all cystic fibrosis (CF) treatment centres at Australian hospitals. Annual data collected since 1998 include date and summary cause of death of patients who have died over that period. The proposal is to obtain, through data linkage with the National Death Index, information to verify and augment the date and cause of death information recorded in the ACFDR for persons who have died over the period from 1998 until the most recent available date.
Applicant: Australian Orthopaedic Association National Joint Replacement Registry Approval valid until 31 December 2016
As the rate of total hip and knee replacement has continued to increase it is critical to determine the long-term consequence of total joint replacement (TJR) to assess risk versus benefit. Data are conflicting for an association between TJR and overall cancer risk. Metal-on-metal (MOM) total hip replacements have been widely used over the last decade, particularly in younger patients.
Linkage with the Australian Cancer Database (ACD) and Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) will be undertaken to establish whether TJRs are associated with increased incidence of cancer
Applicant: Monash University Approval valid until 1 August 2021
The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) database is a Clinical Quality Registry which stores information from different sites providing cardiac surgery and recruits patients continually. The purpose of the database is to monitor and improve the safety and quality of cardiac surgery in Australia. The information collected is used to monitor the treatment provided to patients, track serious complications and to understand more about treatment outcomes. It enables the identification of trends and/or gaps that may exist in service provision. Data are also used for research purposes in order to improve cardiac surgery.
Linkage to the National Death Index (NDI) to identify patients who have died beyond 30 days after their procedure, will be undertaken in order to report on long term outcomes of cardiac surgeries, thus providing researchers with additional information to identify trends and/or gaps that may exist in service provision.
Applicant: Cancer Institute NSW Approval valid until 30 June 2017
The Cancer Institute NSW reports quality, process and outcome indicators for cancer treatment in NSW at a state, Local Health District (NSW Ministry of Health administrative areas) and facility level. The reporting program aims to inform health system performance improvement through the investigation, monitoring and evaluation of patterns of treatment and treatment outcomes.
In order to measure mortality and survival outcomes of people diagnosed with cancer in NSW, linkage from NSW Central and Clinical Registries to the National Death Index (NDI) will be undertaken to obtain complete ascertainment of death.
Applicant: Royal Brisbane and Woman's Hospital Approval valid until 31 December 2015
This study extends on previous research conducted at the Royal Brisbane and Women's Hospital, Department of Emergency Medicine and prospectively validates a new clinical decision rule (the ANZAP rule) to rapidly diagnose chest pain. The ANZAP pathway enables patients presenting with chest pain to be risk stratified up to four hours earlier than the current system. It utilises patient characteristics, clinical findings and ECG analysis, in addition to the cardiac biomarkers, to identify patients at risk for acute coronary syndrome (ACS), enabling more rapid diagnosis and treatment.
Patients in this study are treated according to the newly developed protocol, then followed up 30-days post visit. As an additional assessment, one-year follow up data will be collected to identify whether any major cardiac events occurred outside the hospital setting.
Linkage to the National Death Index (NDI) will be undertaken to identify deceased patients to ensure that these patients are not followed-up. The data will also be used to identify the long term outcomes of an accelerated chest pain pathway. The data required from the NDI includes death status, date of death and all causes of death (including all causes)
Applicant: The George Institute for Global Health Approval valid until 1 March 2016
Cardiovascular disease (CVD) is the leading cause of death and disease burden. Data show that approximately half of all CVD events occur in those who have had a prior hospital episode for coronary heart disease (CHD). However, if survivors of Acute Coronary Syndrome (ACS) attend secondary prevention programs and adhere to risk factor modification including drug regimens then their hospital readmissions within one year may be reduced and their survival improved.
The TEXTMEDS study represents a multi-centre randomised controlled trial across 18 Australian sites of 1,400 participants with prior ACS who will be followed for 12 months. The purpose is to investigate whether sending mobile phone text messages with advice about healthy living and preventing heart disease and offering expert advice over the phone to patients who have a high risk of cardiovascular events, will improve their risk factors after 12 months. The primary outcome is to determine whether participants in the intervention group are more adherent than the control group in taking their medications and thus reduce their risk of future cardiovascular events.
Linkage with the National Death Index (NDI) will be undertaken to establish date and cause of death.
Applicant: Royal Children's Hospital Approval valid until 30 June 2018
The AEDI measures early childhood development for around 98% of the 261,099 school entry children for 2009. The B Cohort of LSAC is a sample of 5,107 children recruited in 2004 collecting information on their experiences within their families and communities, their health, their child care experiences and the early years of their education. Consent has been sought on both the AEDI and LSAC to combine the data collected with data from other sources.
Linkage between the Australian Early Development Index (AEDI) 2009 and the B Cohort of the Longitudinal Study of Australian Children (LSAC) will be undertaken
Applicant: Austin Health Approval valid until 31 December 2014
The purpose of this study is to investigate the relationship between clinical, coronary anatomical and procedural factors and long-term outcomes of patients with acute and stable obstructive coronary artery disease undergoing percutaneous coronary intervention (PCI).
The research may identify potential predictors of the long-term outcomes of patients undergoing emergent or elective PCI. Information gained from the study could potentially result in a change of practice in systems of care and procedural aspects of PCI at Austin Hospital.
Linkage with the National Death Index will be undertaken with results being used to analyse survival rates and mortality outcomes of patients. The data will also be used as part of the quality assurance project at Austin Health.
Royal Melbourne Hospital Approval valid until 31 December 2016
The main objective of this study is to analyse the long-term individual responses of antiepileptic drug treatment and assess any risk factors for the treatment outcome by following up patients at a number of Victorian hospitals who commenced the treatment since 2003. It will also describe the nature of service utilization in patients who have been diagnosed with epilepsy.
Premature mortality is acknowledged internationally as a major problem in epilepsy. Despite evidence of this serious problem, there are little data available to inform prevention and the Australia-specific data of risk of mortality in epilepsy is scant. A task force lead by the peak consumer organisations has been formed in recognition of the need to work with researchers to obtain this data, which should provide information about mortality in newly treated epilepsy patients in Australia.
Data Linkage will be undertaken between the study cohort to the National Death Index to obtain both date of death and cause of death
Applicant: University of Melbourne Approval valid until 31 August 2015
This project will investigate whether recipients of the Australian Human Pituitary Hormone Program (AHPHP) hormones will have an increased risk of neurodegenerative diseases through inoculation of disease-causing misfolded proteins, which were derived from human pituitary glands. The Australian National CJD Registry (ANCJDR) plans to evaluate the incidence of neurodegenerative diseases on death certificates of the recipient cohort, relative to age and sex-matched controls from the general population.
Data linkage will be undertaken between the Australian Human Pituitary Hormone Program (AHPHP) recipient data held by the Department of Health and the National Death Index to identify AHPHP recipient deaths.
Applicant: Griffith University and Gold Coast University Hospital Approval valid until 1 September 2016
The population of older adults (≥65 years) in Australia is projected to double within 50 years and will be accompanied by increased need for access to intensive care services, making resource allocation and associated health care costs a significant consideration. The importance of identifying potentially modifiable factors that might impact on patient outcome is required to optimise therapeutic recovery for critically ill, older adults.
The aim of this study is to describe and compare the differences in non-modifiable and potentially modifiable predictors of death and complications in three subgroups of critically ill older adults, aged 65 to 74, 75 to 84, and 85 and older. The primary outcome is mortality in hospital or after hospital discharge. Potentially modifiable factors that might influence patient outcomes include functional ability, protein/calorie intake, skin integrity, and hospital-acquired (nosocomial) infections.
This research will further develop our understanding of factors that might contribute to mortality and the development of complications in critically ill, older adults and allow for possible interventions to be developed and tested across a variety of critical care settings
Data Linkage will be undertaken between patient records from the Gold Coast Hospital & Health Service and Princess Alexandra Hospitals ICU Hospital Based Corporate Information System (HBCIS) and the National Death Index to obtain date and underlying cause of death, as well as state/territory of registration.
Applicant: University of Melbourne Approval valid until 31 December 2016
The main overall objective of the project is to estimate the excess amount of breast cancer (i.e. over diagnosis) due to breast cancer screening and to relate this to any reduction in breast cancer mortality due to breast cancer screening. The value of screening has often been questioned because of over diagnosis (and subsequent treatment without benefit) and there have been numerous calls to provide women with better information regarding the harms and benefits of screening. However, because of the uncertainty in current estimates of over diagnosis it is impossible to provide women with useful information, and for policy makers to assess the harms and benefits of screening. The study is designed to provide valid and precise estimates that will be of direct benefit to Australian women and to Australian policy makers and screening providers.
The project involves a cohort of about 66,000 women invited to attend BreastScreen in 1994 and 1995 in Western Australia. Data linkage will be undertaken between the cohort and the National Death Index, the Australian Cancer Database and Medical Benefits Scheme data to obtain (a) date and cause of death, (b) breast cancer diagnoses and (c) information on Medicare-reimbursed mammography to ensure that women who have private mammography are properly classified.
Australian Longitudinal Study of Womens Health (EO 2014/3/110)
Applicant: University of Queensland Approval valid until 31 December 2030
This study is a longitudinal population-based survey, funded by the Department of Health. The project began in 1996 and examines the health and wellbeing of over 40,000 Australian women. This information from the study has helped to shape and develop relevant policies and services nation-wide that have positively affected the health of participants and the population they represent. Data Linkage between the study cohort and the National Death Index will be undertaken to establish fact and all causes of death. This will enable information on participants who are deceased to be updated, as well as allowing analysis of rates and predictors of mortality.
Applicant: University of New South Wales Approval valid until 31 October 2018
In Australia, hepatitis C virus (HCV) or hepatitis B virus (HBV) infections are associated with increased morbidity, mortality and health-related costs. Effective treatment for both infections is available and is associated with the prevention of HCV- and HBV-related morbidity and mortality. New treatments are also being developed. Given this, the expansion of HCV treatment uptake, and the identification and management of undiagnosed cases of HBV are key components of the National Hepatitis C Strategy 2010-2013 and the National Hepatitis B Strategy 2010-2013. This project will establish an annual prospective population-based surveillance system for monitoring morbidity and mortality among people diagnosed with HCV or HBV infection in NSW. It will evaluate trends and identify populations at increased risk of HCV- and HBV-related morbidity and mortality, and thus generate important data informing future policy to reduce the HCV and HBV burden in NSW.
Data linkage between the NSW Notifiable Conditions Information Management System (NCIMS) and the National Death Index will be undertaken to obtain: date and all causes of death as well as sex, month and year of birth, age at death, country of birth and duration of residence in Australia, SLA of residence and state/territory and year of registration.
Data linkage studies to evaluate the association between use of anti-diabetic and cholesterol medications, the Mirena intrauterine device and risk of, and survival from, gynaecological and other cancers (EO 2014/3/116)
Applicant: QMIR Berghofer Medical Research Institute Approval valid until 31 December 2017
Recent years have seen rising numbers of prescriptions for the levonogestrel-impregnated intra-uterine device Mirena, diabetes medications such as Metformin, and cholesterol lowering medications such as statins. Data linkage will be undertaken between the National Death Index, Australian Cancer Database, Medicare Benefits System and Pharmaceutical Benefits System to explain whether these devices/medications effect cancer risk or influence survival. The results of this study will inform decision making on medication use.
Proportional differences in children's school readiness based on their differential exposure to early childhood services (EO 2014/3/117)
Applicant: Department of Education Approval valid until 31 December 2015
The aim of this study is to investigate the link between intensity of exposure to early childhood education and care (ECEC) services and children's school readiness and the roles of different ECEC services in buffering the negative effects of low/high intensity exposure to ECEC services on children's school readiness. It will further quantify the extent to which children's school readiness varies by the differential exposure to ECEC services. Data linkage will be undertaken between the Child Care Management System and the Australian Early Development Index data set.
Risk stratification of the hepatocellular carcinoma development and outcomes using transiet elastography (EO 2014/3/119)
Applicant: Alfred Hospital Approval valid until 31 August 2015
FibroScan is a non-invasive method of assessing liver scarring, termed fibrosis. The aim of this study is to determine the role of FibroScan in predicting outcomes in hepatocellular carcinoma, the most common form of liver cancer and the most rapidly increasing cause of cancer-related death in Australia. The results of this study could lead to more effective hepatocellular carcinoma surveillance and improve the cost-effectiveness of screening. Data linkage will be undertaken between the FibroScan database, the Australian Cancer Database and the National Death Index.
Applicant: Woolcock Institute of Medical Research Approval valid until 31 August 2015
The aim of this project is to assess whether there is a difference in the amount of allergy between children who were immunised with two different types of pertussis (whooping cough) vaccine, whole cell pertussis (wP) and acellular pertussis (aP).
Data linkage will be undertaken between the Childhood Asthma Prevention Study (CAPS) participant data with Australian Childhood Immunisation Registry (ACIR) data. Recruitment for the Childhood Asthma Prevention Study was undertaken between 1997 and 2000. The initial cohort was 616 participants and data were collected from 552 children at 18. While CAPS collected information about the vaccinations children received, data regarding the exact type of pertussis vaccine administered wP or aP were not available to parents at the time of data collection. The proposed linkage will provide this additional information for each participant in CAPS.
Australian and New Zealand SNAPSHOT Acute Coronary Syndrome (ACS) (EO 2014/3/121)
Applicant: The George Institute for Global Health Approval valid until 11 November 2020
This study aims to measure the extent to which access to medical services and utilisation of medicines are associated with health outcomes in people that have survived Acute Coronary Syndrome. These study findings will inform future clinical practice and policy for follow-up care of these people. Data linkage between the Pharmaceuticals Benefits System, Medicare Benefits System and the National Death Index will be undertaken.
Applicant: University of South Australia Approval valid until 31 May 2018
ACaDS is one part of a project focussed on developing, then demonstrating, the value of an advanced data system for monitoring cancer stage, co-morbidity and outcomes for Aboriginal people in South Australia. As a partnership between the University of South Australia; the South Australian Health and Medical Research Institute; the Aboriginal Health Council of South Australia; Cancer Council SA and the Beat cancer project; SA NT DataLink; and SA Health, ACaDS has the active oversight of an Aboriginal Community Reference Group. It uses South Australian Cancer Registry data to identify cancer events among Indigenous South Australians and matches these with non-Indigenous controls on the basis of diagnoses, age, sex and diagnosis year.
The objective is to quantify inequalities between Aboriginal and non-Aboriginal Australians in cancer stage, treatment and risk-adjusted survivals then apply these data in targeting services, monitoring implementation and evaluating effects on inequalities. This proposal aims to broaden the project data to include Pharmaceutical Benefits Scheme (PBS) by linkage to obtain information on chemotherapy, co-morbid disease management in primary care and actual and recommended treatment pathways.
Applicant: University of Queensland Approval valid until 21 January 2015
Project summary
The aims of this project are to analyse the characteristics of patients admitted to intensive care, measure mortality, and analyse the personal, health services and technological factors affecting survival rates of these patients from 2002 until present, and annually for the next five years. A particular aim is to develop a model of risk over time for cardiac surgery patients and to investigate whether team case volume has an effect on this risk. The researchers wish to link the ICU cohort with the National Death Index to establish fact and date of death for use in survival analysis.
Applicant: University of Melbourne Approval valid until 31 December 2013
The Passports study involved interviews with 1,325 adult prisoners in Queensland in the weeks prior to their release, and again 1, 3 and 6 months post-release. The study involves linking interview data with recidivism and health service utilisation data covering the first two years post-release. Linkage with the National Death Index will be undertaken to identify deaths within 2 years of release.
The aims of the study are to analyse the incidence, timing and causes of death in a representative cohort of adult prisoners/ex-prisoners, and thus to identify health-related predictors of mortality, in order to make evidence-based recommendations for the prevention of mortality in recently released prisoners. Previous record linkage studies have shown that ex-prisoners are at increased risk of death, however limitations of routinely collected data mean that these studies have had limited capacity to identify risk factors for death, which could inform preventive interventions.
Applicant: Department of Surgery, Deakin University and Geelong Hospital Approval valid until 31 December 2014
The purpose of this study is to determine the short and long term survival after resectional surgery for colorectal cancer in patients over eighty years of age at Geelong Hospital (Victoria) compared with younger patients, and to compare these with the Australian standard population. Approximately 20% of patients undergoing surgery for colorectal cancer are over the age of eighty years, and the shorter life expectancy of these patients and their higher rate of associated comorbidities means that their treatment is often different from younger patients. The long term outcomes of older patients have been poorly studied both locally and internationally. A further aim is to assess the utility of post-operative surveillance. This may help to make better decisions about whether such elderly patients need to be subjected to expensive, invasive and potentially harmful surveillance post-surgery for bowel cancer.
Linkage to the National Death Index will be undertaken to obtain fact, date and cause of death to determine the survival rates due to cancer and other causes.
Applicant: Orygen Youth Health Centre and Centre for Youth Mental Health, Melbourne University Approval valid until 1 May 2018
The effects of psychosis can be debilitating and have long and short term implications on the lives of suffers. The Early Psychosis Prevention and Intervention Centre (EPPIC), as part of the Orygen Youth Health Clinical Program (OYHCP), demonstrated the immediate benefits that come from providing specialist early intervention (SEI) to young people experiencing their first episode of psychosis. The researchers believe that investigating longer term impacts of SEI, such as mortality, physical health, neuro-cognition and vocational status, are integral to the implementation of future clinical and best practice guidelines.
This study is aimed at investigating the mortality of the First Episode Psychosis Outcome Study (FEPOS) cohort as part of a wider project designed to examine the 15 year outcomes of participants who were treated for a first episode of psychosis at the EPPIC between 1998 and 2000. Linkage to the National Death Index will be undertaken to determine fact, date and all causes of death.
The results of this study will be used to establish mortality rates for the FEPOS cohort 15 years after first episode and, more specifically, rates of natural versus unnatural (ie. suicide) cause, timing of death in relation to treatment, and the impact a range of individual morbidity characteristics had on mortality over time. Such analyses are important in the establishment of outcome and clinical performance measures.
Applicant: University of Queensland Approval Valid until 31 December 2016
The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative, cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.
The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to Department of Health and Aging - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.
The AIHW will act in its role as an Integrating Authority, and link the ALSWH 1921-1926 birth cohort to a number of aged care-related Commonwealth datasets: Aged Care Funding Instrument, Resident Classification System, Community Aged Care Program, Extended Care at Home Program, Extended Care at Home - Dementia Program, Home and Community Care, and Aged Care Assessment Program. The resulting data will provide a unique and nationally representative resource for evaluating the current health and psychological policy for women in this older age group, and potentially lead to the implementation of changes that will improve health care services for this population
Applicant: Australian Institute of Health and Welfare Approval valid until 31 December 2014
The AIHW has been commissioned by the Standing Council on Community and Disability Services Advisory Council (SCCDSAC) to link and analyse the Disability Services National Minimum Data Set (DS NMDS) 2010-2011 and the Home and Community Care National Minimum Data Set (HACC NMDS 2010-2011. The main objectives of this project are to further the knowledge, experience and capability to conduct data linkage across community service administrative collections and to analyse the characteristics of clients who are common to the Disability Services and the Home and Community Care programs in the same time period. The outcomes are intended to provide valuable information for the development and monitoring of service needs that cross these service programs.
Applicant: BioGrid Australia, Royal Melbourne Hospital Approval valid until 3 December 2014
Cancer is a common cause of morbidity and mortality in Australia. Chemotherapy is regularly used for the treatment of a wide variety of cancers with varying success. Palliative chemotherapy is often administered to extend and/or improve the quality of life of patients with advanced stages of cancer in Australia. However, currently there are no Australian data on the impact of palliative chemotherapy on patients. The current study aims to assess the frequency of palliative chemotherapy and its impact on quality of life, and to establish whether cancer type and any patient factors such as age, gender and socio-economic status impact on this and mortality rates. Results of this study will enable clinicians to make informed decisions about the use of palliative chemotherapy for individual patients.
Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.
Applicant: The Kirby Institute, University of NSW Approval valid until 1 June 2014
The Australian HIV Observational Database (AHOD) is an ongoing prospective cohort study. Since its inception in 1999, the AHOD has been used to monitor the treatment and outcomes of HIV, including the pattern of anti-retroviral treatment use among different demographic groups, and HIV and non-HIV related causes of death. An important step in progressing this study is to establish measures of mortality that can ultimately be used to assess the impact of HIV-positive status on chronic disease management and health promotion.
Linkage will be undertaken with the National Death Index to determine fact and date of death.
Applicant: The Institute of Endocrinology and Diabetes, The Children's Hospital at Westmead Approval valid until 1 July 2016
Type 1 diabetes has a significant impact on health and is linked to increased rates of mortality. However, specific factors which lead to increased mortality amongst sufferers are often still unclear. The study will examine the impact of autonomic nerve functioning and microvascular complications on death rates amongst type 1 diabetes sufferers. The results of could potentially be used to inform risk factor modification amongst the at risk population.
Applicant: Stroke Division, Florey Institute of Neuroscience and Mental Health Approval valid until 1 July 2017
The Australian Stroke Clinical Registry (AuSCR) is a national, clinical quality registry of patients admitted to hospital with acute stroke or transient ischaemic attack. The registry represents a collaborative effort to monitor, promote and improve the quality of acute stroke care. It is an ongoing registry with its own governance underwritten by the Florey Institute of Neuroscience and Mental Health (affiliated with the University of Melbourne). Data collection for AuSCR commenced in 2009.
Linkage will be undertaken with AuSCR data with the National Death Index to obtain the fact, date and all causes of death, and will be repeated annually for five years.
Applicant: Cardiology Department, Concord Repatriation General Hospital Approval valid until 21 April 2018
The Snapshot Acute Coronary Syndrome (ACS) audit involved the collection of detailed information about consecutive patients (4,296) admitted to 463 public and private hospitals in Australia and New Zealand from 14-27 May, 2012. The aims of the study are:
Linkage will be undertaken with the National Death Index to obtain fact and date of death, and all causes of death and will be repeated annually for 5 years.
Applicant: Research Development and Co-ordination Section, Research Development Branch, Department of Veteran's Affairs Approval valid until 31 December 2014
This is a longitudinal follow-up study as part of phase two of the larger Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The SHOAMP followed a 2001 Royal Australian Air Force Board of Inquiry following concerns that personnel had increased health risks due to exposure to chemicals used in spray sealing of F-111 fuel tanks in 1999. This project will enable the Department of Veterans' Affairs to ascertain the extent of cancer and mortality in this group of RAAF/Civilian personnel and to develop appropriate policy responses.
The fourth MCIS intends to ascertain if there is a higher rate of death and cancer in F-111 fuel tank maintenance personnel compared to other aircraft technical trades, non-technical personnel on the same airbase and the age matched standardised Australian population. This study is a continuation of three previous Mortality and Cancer Incidence studies which make up phase two of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The fourth MCIS will include an additional group of Tier Classified F-111 fuel tank maintenance personnel.
Linkage will be undertaken with the National Death Index to obtain fact, date and all causes of death and with the ACD to obtain cancer diagnosis and associated information.
Applicant: BioGrid Australia Approval valid until 30 November 2014
Internationally, the incidence of type 1 diabetes mellitus is rising. While children diagnosed with Type 1 diabetes mellitus (T1DM) in the 21st century can grow and develop normally, they remain at risk of complications associated with long-standing hyperglycaemia and apparently higher mortality. This study aims to describe the clinical course in terms of glycaemic trajectories, as well as complication and mortality rates in an Australian cohort of adults diagnosed with T1DM during childhood who have transitioned from paediatric services at The Royal Children's Hospital (RCH) to adult services at the Royal Melbourne Hospital (RMH).
The aim of the study is to document the clinical outcomes and mortality rates for adults who were treated for T1DM at the RCH in childhood and who were transitioned from to adult services at RMH. Comprehensive T1DM data collections will be undertaken, from established T1DM databases at these two hospitals, accessed via BioGrid Australia.
Linkage will be undertaken with these datasets with the National Death Index to obtain fact, date and cause of death. This will enable analysis of mortality rates in individuals diagnosed with T1DM in childhood. The relationship between age at diagnosis/time since diagnosis and each of glycaemic control, onset of diabetes-related complications (including cardiovascular and cerebrovascular disease) and mortality will also be analysed.
Applicant: St Vincents Hospital Approval valid until 31 December 2020
Inflammatory bowel disease (IBD) is a chronic disease group, including Crohn's disease and Ulcerative Colitis that affects about 78,000 Australians, predominantly between the ages of 15 and 40. IBD has a broad spectrum of disease manifestation, from mild to severe and debilitating. This project, which commenced in 2007, is the first population-based natural history study of patients diagnosed with IBD in Australia. It aims to increase the understanding of the real life progress of IBD, help with management of these patients in the future, and assess the health costs associated with this chronic disease. It involves examining health care outcomes, care after diagnosis including surgery, hospitalisation, GP and specialist visits, and medication use.
The aims of the follow up are to analyse disease severity and cost by frequency of Medicare funded specialist reviews to IBD affiliated doctors (e.g. gastroenterologists, surgeons and paediatricians, from the Medicare Benefits Scheme), and to assess disease severity and progress by assessing use of the various groups of IBD specific medications (from the Pharmaceutical Benefits Scheme).
Data linkage will be undertaken with the Pharmaceutical Benefits Scheme and Medical Benefits Scheme and the National Death Index to determine fact and all causes of death.
Applicant: Monash University Approval valid until 1 October 2020
Percutaneous revascularisation (also known as percutaneous coronary intervention or angioplasty) is a non-surgical procedure used to treat the stenotic (narrowed) coronary arteries of the heart found in coronary heart disease. The Melbourne Interventional Group (MIG) Registry was established in 2004 to develop a systematic interventional cardiology database that would provide valid and reliable longitudinal clinical data of patients undergoing percutaneous revascularisation in Victoria. The MIG Registry is located in the Department of Epidemiology and Preventive Medicine at Monash University and now contains over 20,000 percutaneous coronary intervention (PCI) cases. It actively collects follow-up outcome data on these patients at 30 days and 12 months post procedure. The data enables evidence based research on patient outcomes with the aim of providing better care and improving outcomes for patients.
Repeat linkages with the National Death Index will be undertaken on a two yearly basis, to determine fact and date of death, all causes of death, and State/Territory in which death occurred.
Applicant: Royal Prince Alfred Hospital Approval valid until 1 April 2017
Congenital and inherited heart diseases are common in Australia but their causes are poorly understood. The NSW Adult Congenital Heart Disease (ACHD) database project commenced in 2010 with the support from the National Heart Foundation NSW Cardiovascular Research network, and is housed at Royal Prince Alfred Hospital (RPAH). It represents the largest group of congenital heart disease patients in Australia. The main aim is to create a comprehensive longitudinal database of this patient group to allow clinicians and researchers to gain a better understanding of the characteristics of this cohort, which will potentially have benefits for these patients in the future. The database provides for an examination of trends in the incidence and prevalence of conditions, treatments, operative techniques and general clinical management, ultimately improving future treatment for congenital heart disease patients.
The specific aim of the current study is the analysis of survival for different diagnosis and treatment groups by various factors, including the existence of other conditions. Linkage of the ACHD database of approximately 5,000 records with the National Death Index (NDI) to determine fact, date and all causes of death, and state of registration will be undertaken until the end of the study in 2017.
Applicant: Queensland Institute of Medical Research Approval valid until 31 December 2020
The Australian National Endometrial Cancer Study (ANECS) is a national population-based case-control study that recruited women with endometrial cancer in all six states between 2005 and 2007. The ANECS database contains information on genetic and environmental risk factors, tumour characteristics and clinical follow-up data.
The aim of this phase of the study is to conduct a longitudinal follow-up of the ANECS cases (about 1500), including mortality outcomes. Survival analyses will be conducted to examine the effect of various genetic, molecular and environmental factors, and treatments. The current literature examining the effect of potential prognostic factors for endometrial cancer is relatively limited, and the ANECS study may lead to improved patient outcomes through the identification of modifiable factors.
Linkage with the ANECS cohort to the National Death Index will be undertaken to obtain date of death and all causes of death, and state and year of registration.
Applicant: Australian Institute of Health and Welfare Approval valid until 31 December 2020
The aim of this project is to examine links between people who receive housing assistance (primarily Public Housing (PH), and State Owned and Managed Indigenous Houising (SOMIH)) and specialist homelessness services.
Linkage with NSW and WA housing data with AIHW homelessness data will be undertaken and this will enable the development of a picture of people who access both housing and homelessness support services, and their patterns of service usage.
Applicant: University of New South Wales Approval valid until 31 December 2023
The incidence rates of AIDS defining illnesses continue to decrease due to vastly improved HIV treatment. Increasing survival of people with HIV means that cancer, including AIDS defining cancer and other HIV-related cancer, is one of the most important issues as the population of people with HIV increases and ages. This study aims to follow up through data linkage people on the National HIV/AIDS Registry to determine the incidence of various types of cancer. The study cohort will include all adults (aged 16-80 years) diagnosed with HIV-infection in Australia between 1982 and 2012 as notified to the Australian National HIV/AIDS Registries.
Cancer incidence will be calculated for each type of cancer across five time periods broadly representative of combination therapy availability and advances in Australia, 1982-1995 (pre-highly active antiretroviral therapy or HAART), 1996-1999, 2000-2004, 2005-2007, and 2008-2012. These will be compared with cancer incidence in the general population. This will enable analysis of the impact of HIV treatment on cancer risk over time to determine risk factors for AIDS defining cancers and other HIV-related cancers, and so identify areas of emerging clinical and public health needs in the Australian HIV population for cancer prevention and early diagnosis. It will also inform the debate regarding the risks and benefits of commencing HAART at HIV diagnosis.
Linkage will be undertaken with the National HIV/AIDS Registry to the Australian Cancer Database to obtain cancer diagnosis items; and to the National Death Index to obtain date of death, all causes of death and state/territory of registration.
Applicant: Burnet Institute Approval valid until 31 December 2019
The Melbourne Injecting Drug User Cohort Study (MIX) is the largest cohort of people who inject drugs (PWID) ever established in Australia. The cohort is comprised of 688 young (aged 18-30 years) PWID who were recruited with their consent during 2008-2009 with a view to long term follow-up. The primary information collected in MIX includes data on injecting drug use behaviours, drug market access patterns and health service utilisation. Blood samples have been collected from first follow-up onwards for serological testing to determine blood borne virus status. Participants are followed up annually (or more frequently depending on hepatitis C status) at which time modified versions of the baseline questionnaire are administered to determine changes in behaviours and outcomes over time.
In its role as an Integrating Authority, AIHW will undertake the linkage of the MIX study with Medicare Benefits Scheme (MBS) and Pharmaceutical Benefits Scheme (PBS) data. This linkage will allow for an examination of cohort members' use of primary care services and key pharmaceuticals over time. Such information has never been collected in the Australian context, and is important in understanding the relationship between health services utilisation and outcomes such as cessation of drug use. This in turn can inform the development of prevention and service responses designed to ameliorate the burden of injecting drug use.
Applicant: University of Sydney Approval valid until 31 December 2020
The study is a randomised controlled trial evaluating psycho-education intervention for melanoma survivors. It also aims to assess the cost-effectiveness of supportive health care services for melanoma patients. The study will target 192 patients aged over 18 years, who had a previous melanoma diagnosed at AJCC stages I or II, attending one of the four melanoma high risk clinics in New South Wales (NSW).
The study has two objectives:
Linkage between the study cohort to the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS) databases will be undertaken to obtain data about health resources and medications used during the study period. The study questionnaire will also be collecting health service resources used. Linkage to the MBS and PBS databases will only be requested for individuals who have given informed consent to participate in the study.
Applicant: University of Sydney Approval valid until 31 December 2022
This study is an inception cohort study following up people injured as a result of a land transport accident. The project aims to understand the factors associated with social and health outcomes after such an injury, including the compensation and legal processes and the health service experience. Data Linkage between study cohort to Medicare and Pharmaceutical Benefits Scheme (PBS) databases will be undertaken for a year before the injury and two years after the injury. The results will help analyse the frequency, cost and effectiveness of treatments. Results will also guide evidence based reforms in the compulsory third party insurance scheme in New South Wales (NSW).
Participation in the study is voluntary and does not influence injury treatment.
Applicant: University ofNew South Wales Approval valid until 31 December 2020
In this study, the fraction of different cancers attributable to modifiable lifestyle-related risk factors in Australia, will be studied and compared by applying the recently published Population Attributable Fraction (PAF) measure and program to data from five established large-scale Australian cohort studies. These cohort studies will be linked to the Australian Cancer Database (ACD) and National Death Index (NDI), and the relative risks (RR) between lifestyle-related risk factors and the four most common cancers (prostate, breast, colorectal, lung), accounting for the competing risk of death, will be estimated. The population-level prevalence of the risk factors will be estimated from the National Health Survey (NHS).
Applicant: University of Sydney Approval valid until 31 December 2015
This study is phase 1 in a 5 phase collaborative project funded by NHMRC to assess the sustainability of, and community engagement with, tissue banks. The project will provide evidence to inform policy and regulatory direction around tissue banking in Australia. The aim in this phase of the study is for the Australasian Leukaemia and Lymphoma (ALLG) Tissue Bank to identify living donors in order to send them a letter of invitation and questionnaire to collect their views on ethical concerns in tissue banking. These donors have previously consented to participate in future studies, including survey studies.
Linkage with the National Death Index will be undertaken for the purpose of updating the accuracy of the ALLG tissue donor database to identify deceased tissue donors ensuing only living tissue bank donor patients are invited to participate in the study.
Applicant: University of Western Australia Approval valid until 31 December 2014
This project is an extension of a 1997 study, which linked the Western Australian (WA) Cerebral Palsy (CP) Register to the National Death Index to establish duration of life by clinical characteristics and a cause of death profile. The results suggested the mortality rates of individuals with severe disability decrease significantly after the age of 20 years. However, the study could provide little information about the continued life expectancy for subjects with severe CP who had survived their teenage years.
The aim of this project is to provide more accurate CP lifespan information to assist in the assessment of care provisions required over a lifespan. These provisions assist in the daily lives of CP subjects and are administered by their families with the assistance of the National Disability Insurance Scheme. It is proposed to extend the original linkage to include all WA CP registered births to 2010 (approximately 3,100 people).
Linkage between the WA CP records and the National Death Index (NDI) will be undertaken to determine date of death and all causes of death.
Chronic artery disease is a leading cause of death in Australia. This study assesses the role of novel biomarkers in predicting adverse events in subjects presenting with acute coronary syndromes. It aims to assess blood and urine markers within the circulation of the heart and the body to test if they are elevated in patients with heart disease. Serum levels of the angiotensin converting enzyme (ACE) 2 and the receptor for advanced glycation end products (RAGE) have been measured in subjects presenting with stable and unstable acute coronary syndromes. Researchers are seeking to assess the relationship between these circulating biomarkers and subsequent cardiovascular outcomes. This study may potentially identify new treatment targets for coronary artery disease including the development of screening tests, which would help identify patients at highest risk of adverse outcomes following acute coronary syndromes.
Linkage will be undertaken between records for study patients with the National Death Index (NDI) to determine fact and date of death and all causes of death.
Applicant: Flinders University Approval valid until 31 March 2017
The researchers seek to link the Flinders Medical Centre Intensive and Critical Care Unit (ICCU) database of about 25,000 patients with the National Death Index to determine fact of, date of and cause of death for all patients. This information then will be used in statistical analyses to calculate de-identified long-term patient survival rates and monitor them over time. Patient outcomes are generally only known to time of hospital discharge, and determining long-term patient survival is important in researching ICCU clinical care outcomes.
Applicant: University of Adelaide Approval valid until 28 February 2013
Between 1999 and 2001 information pertaining to the surgical procedure endovascular repair (EVAR) of the abdominal aortic aneurysms was collected from 961 patients. This was used along with the long-term follow-up data, to produce a statistical model whereby predictions of outcome after EVAR could be made based on eight preoperative variables. The aim of the study is to update and improve the current model and to re-link the National Death Index to obtain 10-year survival and mortality outcomes for the original patient cohort.
Applicant: Royal Children's Hospital Approval valid until March 2013
This is an extension of a previous study; Young Offenders' Risk and Protective Factor Study; a ten-year follow-up study of a Victorian cohort of 2,489 first time youth offenders. This study, between 1988 and 1998, found a marked increase risk of premature death. The present study will extend the cohort and person-years to include youth offenders between the years 1998 and 2008, giving an estimated cohort size of about 5,000. The aim is to ascertain the mortality profile of the extended cohort over 20 years and identify those who are at greatest risk of early death. The researchers therefore seek to link the cohort with the National Death Index to obtain date and all causes of death.
Applicant: St George Hospital Approval valid until 30 October, 2012
This is a follow-up of a study examining the use of a point of care (POC) blood analyser stationed within the emergency department (ED), operated by ED staff and with results obtained in a few minutes (rather than sending blood to a central laboratory). Patients presenting to the ED with chest pain were randomised to have a critical blood test (troponin T) analysed by the POC machine or by the central laboratory. The original study aimed to determine whether patient processing times in ED could be improved with the use of a POC machine. The current study aims to test whether clinical outcomes are identical regardless of the type of test, as determining by certain events during a 3 month follow-up period: death, cardiac arrest, heart attack, revascularisation procedure (bypass operation or angioplasty/stent). This will be achieved by medical record review, phone call, and linkage with the National Death Index. The researchers seek to link to the National Death Index to obtain date of death.
Applicant: Australian National University Approval Valid until September 2012
This study will follow-up a sample of older drivers in the ACT (aged 65 and over) who volunteered to take part in a study of Driving and Healthy Ageing in 2006. The follow-up study consists of a questionnaire mailed to participants and a brief cognitive assessment administered by telephone. The aim is to evaluate the long-term predictive validity of screening tools and other cognitive and visual measures for identifying older adults at higher risk of road accidents, and assess predictors of readiness to give up driving, to achieve safer driving behaviour on ACT roads. This will inform education programmes and the development of self-assessment tools for older drivers, and help elucidate how variables such as visual function, anxiety and health affect the relationship between cognitive ageing and hazard perception.
The researchers seek to link the study cohort of 41 with the National Death Index in order to identify who among the non-responders to the follow-up study has passed away since 2006.
Applicant: Cancer Council Victoria Approval valid until Ongoing
The MCCS (Health2020) is a longitudinal study established in the 1990s by Cancer Council Victoria to investigate prospectively the role of diet and lifestyle factors in common chronic diseases. Between 1990 and 1994, 41,514 Melbournians aged 40-69 were recruited into the study. The principal objective of the MCCS is to improve the prospective investigation of genetic, dietary and lifestyle factors and risk of cancer and other common diseases such as cardiovascular disease and diabetes. This is being done by selecting a study population with an increased range of dietary exposures, by increasing the accuracy of dietary measurements and by collecting blood for the analysis of dietary biomarkers and DNA polymorphisms involved in dietary and other metabolic processes. MCCS participants are followed up approximately every 3-5 years to determine their subsequent health experience and events, in particular death and cancer diagnosis, for analysis of relationships with genetic, dietary and lifestyle factors. Participants gave consent at the time for Health2020 (MCCS) to contact their doctor and to look at medical records to confirm details of any illness that they may have had or any treatment that may have been given then or in the future.
The researchers seek to link the records of those participants known to have died, but whose cause of death is unknown, (around 2,500 people) with the NDI to obtain cause of death.
Studies have indicated that depression in cardiovascular disease (CVD) patients predicts greater mortality and morbidity. However, there remains limited clarity as to how depression actually contributes to these negative outcomes. This project aims to contribute to current understanding of the pathways between depression, and mortality and morbidity. Specifically, it will investigate the role of physical health-related quality of life (HRQoL) as a mediator. The researchers seek to link to existing depression and HRQoL data for 192 patients from the Psychosocial CABGS (coronary bypass graft surgery) dataset to the National Death Index to obtain date and causes of death (The project also involves linking to the Victorian Admitted Episodes Dataset to obtain hospital morbidity data).
Applicant: Royal Australian College of Surgeons Approval valid until February 2013
The National Breast Cancer Audit (NBCA) collects information from surgeons on the treatment of their patients who were diagnosed with breast cancer. In 2008, in collaboration with the National Breast and Ovarian Cancer Centre (NBOCC), the NBCA linked with the National Death Index to gain death information on these patients and, in the following years, conducted research into factors affecting survival from breast cancer. The researchers are seeking a further linkage with the National Death Index to obtain date and all causes of death to create a more up-to-date dataset. The objective of the study is to assess survival outcomes from breast cancer by various prognostic, socio-demographic and clinical treatment characteristics recorded on the NBCA database. The results will indicate effects of differences in treatment policy on survival outcomes by prognostic marker and other determinants. This information would help determine the most ideal treatment and follow-up regimes for women diagnosed with breast cancer and ultimately reduce mortality from the disease.
Applicant: Queensland Institute of Medical Research Approval valid until 2016
This project involves the follow-up of participants in the Nambour Skin Cancer Study, which took place between 1992 and 1996. It aims to identify whether β-carotene supplementation and other nutritional factors are associated with cause of death, following preliminary analysis of earlier available data that suggests β-carotene supplementation may be protective for ceratin categories of cardio-vascular death. The researchers seek to link the study cohort (1,621 people) with the National Death Index to obtain date and all causes of death.
Applicant: University of Sydney Approval valid until 31 December 2013
Patients who develop venous thromboembolism (VTE) in the absence of a clinically identifiable cause ('unprovoked' VTE) remain at high risk of recurrence for many years. Long-term treatment with warfarin is highly effective but the benefit of prolonging warfarin beyond six months is negated by the risk of major bleeding and the inconvenience of the treatment. There are currently no proven effective and safe alternatives to warfarin to prevent recurrence. ASPIRE, a multicentre, randomised, double-blind placebo controlled clinical trial, is examining the efficacy and safety of low-dose aspirin to prevent recurrent VTE in patients with a first episode of unprovoked VTE who have completed initial treatment with heparin and warfarin. The researchers seek to link the data for the study patients to the National Death Index to obtain date and cause of death for those patients for whom it may not have been recorded.
All participants have given written informed consent to be part of the clinical trial. This includes giving permission for medical records to be accessed during the course of the study to check on health status.
Applicant: Burnett Institute Approval valid until April 2013
This project will bring together data from six Australian studies of people who inject drugs. All the Chief Investigators are collaborators on the recently awarded NHMRC Centre for Research Excellence in Injecting Drug Use and the integration of data across studies was a key objective of this Centre. With many comparable data fields, the combined data for over 2,000 people will provide the capacity to explore the factors associated with mortality across time in this vulnerable population and help inform prevention initiatives. The researchers are seeking to link the combined dataset to the National Death Index to obtain date and all causes of death. Data linkage will use first two letters of each of first name and surname, date of birth, sex and, where possible, last known postcode and date of death.
Applicant: University of Queensland Approval valid until 31 December 2016
The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal Study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.
The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to the Department of Health and Ageing ( DoHA) - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.
DoHA has given approval for ALSWH data to be linked with Medicare (MBS and PBS). This will provide a national database of information on a nationally representative group of women who have already provided data for 15 years. The ALSWH is one of the few large, long-running studies that can link longitudinal survey data and longitudinal health service data for the same individuals. Findings will be translated into evidence that can be used for prioritising health policy and planning to reduce the disease burden in health and to improve health services to Australian women.
The AIHW role is to facilitate the matching of ALSWH data with MBS and PBS data from Medicare on an annual basis, using ALSWH IDs. There is a rigorous process for the data flows for this matching that ensures that identifiable data (names and dates of birth), Medicare PIN and survey response data are all kept separate
The ALSWH also has approval to receive annually-updated mortality data by linkage with the National Death Index.
Applicant: University of Sydney Approval valid until August 2014
Inappropriately managed chronic illness results in exacerbations of health conditions, which lead to avoidable presentations to hospital emergency departments. Nepean Hospital is implementing 'Care Navigation', which is a new strategy tailored to link individual chronically ill patients presenting to the ED with community health services aimed at providing at-home chronic illness care and education. This study is a randomised clinical trial to test the difference in effectiveness to chronically ill patients over a two-year follow-up period between two strategies; comparing the current, symptom-led patient flow from emergency departments with Care Navigation.
The researchers are seeking to link the study cohort of 500 patients with the National Death Index to obtain fact of death at two points in the study: (a) prior to data collection at the commencement of the first year of follow-up to avoid contacting deceased study participants, and (b) at the end of the study period to ascertain mortality as an outcome.
Applicant: Australian Institute of Health and Welfare Approval valid until Ongoing
This project is aimed at improving data quality in the NDSS dataset and subsequently the National Diabetes Register (NDR, which is derived from the NDSS data set) by data linkage to the Pharmaceutical Benefits Scheme (PBS) dataset held by Medicare Australia. Currently there are numerous uncertainties about the insulin use status of registrants on the NDSS dataset, due to ongoing data problems surrounding syringe purchases, limitation in the scope of the NDSS dataset, and complications resulting from the introduction of the medicine Byetta into the NDSS
The NDR, which is designed to monitor the incidence of insulin-treated diabetes in Australia and to provide a resource for epidemiological and clinical studies, requires accurate information on the insulin use status of registrants in the NDSS. Historically the quality of the insulin use status information in the NDSS has been lacking and the NDR has been compromised in its ability to accurately report on cases of insulin-treated diabetes. Linking the NDSS to the PBS will enable information on the number of insulin scripts to be added to the NDR. This in turn will enable (a) validation of the insulin status flag on the NDSS dataset, (b) derivation of a measure of insulin use each year for each registrant in order to monitor the prevalence of insulin-treated diabetes over time, and (c) estimation of the ascertainment rate of the NDSS dataset for insulin-treated diabetes.
The data linkage will be undertaken by the AIHW Data Linkage Unit as part of the regular process of constructing the NDR from the NDSS (obtained from Diabetes Australia every 6 months). The DLU already undertakes a number of steps in this process including linking the NDSS to the National Death Index (EC 2011-4-35).
Applicant: Australian Institute of Health and Welfare Approval valid until 30 June 2014
This projects aims to analyse the use of cardiovascular disease medications, eye disease medications and chronic kidney disease medications by people with diabetes and give a measure of the number of people with diabetes who are using these medications to prevent or treat these associated diseases. It will also explore how self-care products and medications are purchased for the management of both Type 1 and Type 2 diabetes in Australia.
To control glucose levels, people with diabetes need to themselves carry out actions such as life style changes and monitor blood glucose levels, and often need to take prescribed medications including tablets or insulin. If blood glucose levels are left poorly controlled, diabetes can lead to a range of complications including the three above diseases.
The project involves linkage t of the NDSS (held by Diabetes Australia) to the PBS data (held by Medicare). The linked data set will enable analysis by type of diabetes, of the purchasing rates of medications for complications of diabetes. It will also enable the total amount of blood glucose monitoring strips purchased in Australia to be calculated, as these can be purchased through both the NDSS and the PBS programs.
The analysis will be carried out by the AIHW Cardiovascular, Diabetes and Kidney Unit, after receiving the de-identified linked file from the Data Linkage Unit. Thus the identifiable data for linkage will be kept separate from the clinical data for analysis and handled by different units.
This project is part of ongoing work by the AIHW to improve the quality of data held on the National Diabetes Register (NDR). As part of the National Indigenous Reform Agreement on Closing the Data Gap, the Council of Australian Governments has tasked the AIHW with auditing data quality and leading the analysis of Indigenous identification in key datasets, with a baseline report and ongoing five yearly studies to monitor improvement over time. One of the datasets identified for improvement is the NDR, which is a register of individuals who use insulin to treat their diabetes. The quality and integrity of Indigenous health statistics is of critical importance to the evidence base for monitoring progress towards the COAG Closing the Gap targets.
The NDR will be linked to the Pharmaceutical Benefits Scheme (PBS) data (held by Medicare Australia) to obtain Indigenous status from the PBS (known as the Voluntary Indigenous Identifier), to verify the Indigenous status information held on the NDR and to fill information gaps. The aim is to benchmark the current state of reporting of Indigenous status and to improve the quality of Indigenous status information held on the NDR with a view to more complete reporting in future. It is planned to seek approval to repeat the linkage periodically (approximately every 5 years).
The Data Linkage Unit (DLU) will receive the NDR identifying information (but no clinical information) in order to link the NDR to the PBS (Voluntary Indigenous Identifier), and then create a new field to be added to the NDR that will flag if a registrant is Indigenous according to the PBS.
Applicant: University of Melbourne Approval valid until 30 September 2019
The Epworth Hospital Cardiac Surgery database currently consists of data on over 35,000 operations and has routinely been linked to the NDI since 1999. The researchers are seeking to link 19,948 patients from Epworth Hospital Cardiac Surgery database with the NDI to determine fact, date and all causes of death. This information will be used to conduct a 15 year survival data analysis as a means for assessing the impact of conduit (artery and vein) selection in cardiac surgery on long-term patient survival. The resulting information will be a guiding factor in the future of clinical practice in coronary surgery.
Applicant: Orygen Youth Research Centre Approval valid until 30 June 2014
The researchers seek linkage with the National Death Index for 226 individuals who have been identified, through previous research studies at the PACE clinic, as at high risk of developing a psychotic disorder. The researchers wish to determine fact, date and cause of death. This information is to be used as part of their long term (>6 years) follow-up of previous study participants classified as 'Ultra High Risk' who have died.
Applicant: University of Western Sydney Approval valid until 16 April 2015
This study aims to measure the extent to which medications are used prior to and during pregnancy, and the associated health outcomes for mother and child. It will also examine the extent to which utilisation has changed in response to policy reforms, and whether differences in utilisation exist between different population groups. Findings regarding the safety and utilisation of medications will be important for informing policy and guidelines on their prescription during pregnancy.
The study includes all women who gave birth in NSW and Western Australia in the period 2003 to 2010, later to be updated to include 2011-14 data. The Centre for Health Record Linkage in NSW and WA Data Linkage Branch will undertake the linkage of state-based perinatal, hospital, emergency department, death and birth defect records for their respective states. The AIHW will then undertake the linkage of Pharmaceutical Benefits Scheme data from Medicare to provide the medication information.
Applicant: University of Melbourne Approval valid until 31 May 2016
This study aims to examine the differences in outcomes for coronary artery bypass surgery (CABG) between different types of grafts from other parts of the body and the survival and clinical wellness of participants receiving CABG after 10 years. The researchers seek to link a cohort of patients who have undergone CABG between 1995 and 2002 at the Royal Melbourne and Melbourne Private Hospitals, to the NDI to obtain date and cause of death. This will be used to help ensure that follow-up letters are not sent to deceased patients and to analyse outcomes for CABG patients.
Applicant: Australian Orthopaedic Association Approval valid until 30 September 2019
The AOA National Joint Replacement Registry collects data on all joint replacement surgery in Australia. The analysis of the data provides valuable information on the outcome of joint replacements. The application seeks linkage to the NDI in order to identify those patients who have died and to obtain date of death and cause of death. This information is necessary to analyse survivorship of joint replacement procedures and mortality post-procedure. The Registry has been linked to the NDI annually since its establishment in 1999 (approved as EC 297). This application is for further ongoing linkage, anticipated to be undertaken twice a year.
Applicant: University of New South Wales Approval valid until 31 December 2013
The ATOS is a prospective study of treatment outcomes for heroin dependence. Heroin users were recruited on entry to treatment in 2001 and 2002 and then regularly followed up for three years. Eleven year follow-ups are currently underway. The researchers are seeking to link the study cohort with the NDI to obtain fact, date and cause of death.
Fact of death is requested in order to avoid attempting to contact participants who are deceased. The causes of death are requested in order to analyse the impact that treatment exposure has on mortality. It is known that heroin users have much higher rates of mortality, particularly as a result of suicide.
Applicant: Concord Repatriation General Hospital Approval valid until 31 January 2014
The aim of the research is to describe the epidemiology of inflammatory bowel disease to determine the mortality and morbidity associated with it and to test a number of specific hypotheses. The researchers are seeking to link the patient cohort with the NDI to obtain fact, date and causes of death, and year and state of death registration.
Applicant: Victorian Cervical Cytology Registry Approval valid until 28 June 2013
In 2007, the Australian Government funded the Human Papillomavirus (HPV) vaccine through its National Immunisation Program. This project will be the first to evaluate the effectiveness of the vaccine by comparing the difference in incidence of cervical abnormalities by vaccination status and will also determine the screening patterns of vaccinated women. It involves the linkage of the Victorian Cervical Cytology Registry (VCCR) and the National HPV Vaccination Program (NHVPR) for Victorian women. The primary aims are to compare participation in cervical screening and to compare the incidence of cervical abnormalities between vaccinated and unvaccinated women.
The HILDA (Household, Income and Labour Dynamics in Australia) Survey has been conducted on an annual basis for 11 years, funded by the Australian Government. The purpose of this proposal is to match the HILDA sample contact database to the NDI to identify deaths. This will ensure accurate measurement of sample outcomes and will improve the quality of data both by identifying non-respondents who have died (which will assist in the construction of response rates and population weights), and through the provision of mortality data (fact of death, date of death and cause of death). In conjunction with the life course data provided by the HILDA survey, this will also facilitate research investigating health and socio-economic determinants of mortality.
Applicant: Cancer Council Victoria Approval valid until 31 December 2016
Researchers from Cancer Council Victoria are undertaking four separate case-control studies of less commonly understood cancers using a common cohort dataset. This is referred to collectively as the RESoURCES (Rare and Emerging Subtypes of Under-researched Cancers Epidemiology Study) Program.
The researchers seek a single linkage of this common dataset with the National Death Index and the Australian Cancer Database to verify cancer diagnosis and vital status to be used in all four component studies. A single linkage of the common dataset is sought to reduce duplication of effort and to expedite the linkage process.
Applicant: University of Queensland Approval valid until 30 June 2013
The Rwanda Deployment Health Study (RDHS) is a retrospective longitudinal census of the health and compensation outcomes of all veterans of the Australian Defence Force deployment to Rwanda (Operation Tamar). The study aims to link data from medical and personnel records with compensation and healthcare utilisation datasets with the National Death Index, from the date of the first Rwanda deployment to the end of 2011, with the aim of understanding the longitudinal trajectory of health and compensation outcomes for ADF peacekeeping veterans and veterans in general. Linkage will be undertaken to obtain date and causes of death and the year of death registration.
Applicant: Australian Institute of Health and Welfare Approval valid until 30 June 2016
Data showing bowel cancer outcomes for those screened by the National Bowel Cancer Screening Program (NBCSP) are limited. This project aims to investigate and report on differences in outcomes between participants of the NBCSP and people in the NBCSP target ages who did not participate. Measures such as bowel cancer incidence, mortality and cancer stage (where possible) will be reported, along with additional information on the performance of the screening kit (that is, its predictive value). Linkage of NBCSP data to the Australian Cancer Database (ACD) and National Death Index (NDI) will be required to achieve this at the national level
Applicant: The Prince Charles Hospital, Townsville Approval valid until 31 December 2013
The aim of the research is to assess whether there are any differences between the outcomes of Indigenous and non-Indigenous patient cohorts who undergo cardiac surgery at Townsville Hospital. The researcher is seeking to link details of all patients who underwent cardiac surgery at Townsville Hospital between August 2008 and April 2010 with the National Death Index to obtain fact of death, date of death, and all causes of death.
Applicant: Princess Alexandra Hospital, Brisbane Approval valid until 31 March 2013
The researchers are seeking to link approximately 40 study participants classified as lost to follow-up with the National Death Index to obtain fact, date and all causes of death. The data are requested as part of the initial descriptive component of the research which will examine the trajectory of critically injured adults in terms of health and economic outcomes during the 24 month period following their discharge from hospital.
Applicant: Queensland Health Approval valid until 31 December 2013
The aim of this research is to establish specific medical conditions contributing to mortality in persons with a mental illness, and to ascertain which of these conditions contribute the most to excess mortality. The research involves Aboriginal and Torres Strait Islander people. The health records of approximately 30,000 patients who have accessed public mental health services in the Darling Downs and South-West Queensland Health from 1991-2010 will be linked with the National Death Index to establish fact, date and all causes of death, as well as year of death registration, at the time of death.
Applicant: Monash University and Epworth Hospital Approval valid until 30 September 2013
This is a longitudinal study that has been on-going since 1995 to determine whether people who survive a traumatic brain injury (TBI) have an increased risk of death following discharge from a rehabilitation setting. The aim of this research is to determine if patients enrolled in the study since 1995 have died and if so, what was their cause of death. Linkage will be undertaken for approximately 3,300 participants with the National Death Index to obtain fact, date and all causes of death.
Applicant: University of Adelaide Approval valid until 31 November 2017
This is a longitudinal study of approximately 1,195 men aged 35-80 years and residing in the north-west suburbs of Adelaide at the time of recruitment. The aim of this particular aspect of the FAMAS study is use cause of death as part of the analysis of health outcomes and fact of death to maintain the participant data base. Linkage will be undertaken with the National Death Index to establish fact, date and all causes of death.
Applicant: University of Western Australia Approval valid until 31 December 2015
This research is part of the 'Pathways Project' which links several Western Australian health data sets. The aim of the Pathways Project is to enable assessment of medications as predictors of adverse infant outcomes and of adolescent and adult morbidity. Data linkage of a study cohort of mothers in Western Australia with major mental health disorders and their children, to Pharmaceutical Benefits System records will be undertaken to establish whether in-utero exposure to psychotropic medications has negative outcomes on children.
Applicant: University of Adelaide Approval valid until 31 December 2017
The North West Adelaide Health Study (NWAH Study) is a longitudinal study begun in 1999. The study aims to collect information among residents in North West Adelaide about a range of chronic diseases (e.g. diabetes and asthma) to enable reporting on the risk factors associated with this group of diseases. Data linkage to the NDI will be undertaken to obtain date of death for those who have died.
Applicant: Australian Institute of Health and Welfare Approval valid until 31 August 2013
The purpose of the Enhanced Mortality Database (EMD) project is to create a time series of mortality data that contain enhanced information on Indigenous identification. It is being conducted in stages and is now at Stage 4. The main objectives of Stage 4 are to continue to develop the time series of enhanced mortality data by extending the linkage to cover deaths data for the period 2007-2010 that have now become available, to include additional data sets that were not included in the previous stages, and to explore other algorithms for deriving Indigenous status beyond the "Ever-Indigenous" approach.
NHA performance indicator #21: Treatment rates for mental illness is defined as the proportion of the population receiving clinical mental health services. The indicator is published annually in the COAG Reform Council Report. The two main data sources for the indicator are Community Mental Health Care (CMHC) client counts at the State/Territory level and patients in receipt of Medicare subsidised services. Other relevant data sources are Department of Veterans Affairs (DVA) data covering subsidised medical treatment for eligible veterans and Private Mental Health Alliance (PMHA) data covering private psychiatric hospitals
The first phase of this project (approved as EC2010/3/39) linked Medicare PBS data with CMHC data for 3 jurisdictions and found that the combined count would be reduced by around 5% taking into account this overlap. The current proposal is for a second round of linkage, extending the work that began with 2009-10 MBS and CMHC data to linkage of 2010-11 data from MBS, CMHC (more than the 3 jurisdictions participating previously), DVA and PHMA with the aim of formalising the methodology for annual reporting.
Data linkage will be undertaken using the statistical linkage key SLK581 and postcode.
Applicant: Australian National University Approval valid until 31 December 2015
The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. The aim of this project is to investigate the relationship between a range of novel and established demographic, lifestyle and health-related risk factors and cardiovascular disease outcomes. It will provide data that are specific to the Australian context at the same time as contributing to knowledge internationally.
The study participants will be linked to the National Death Index to obtain date and all causes of death to investigate the relationships of various established and emerging purported cardiovascular disease risk factors to all cause and case-specific mortality, focussing on cardiovascular disease mortality.
Applicant: Australian National University Approval valid until 31 December 2016
The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. This project will examine the relationship between use of prescription medications and subsequent health outcomes, health services use and costs, and to examine how these relationships vary according to a range of socio-demographic, lifestyle and health related characteristics. In doing so, it will provide important evidence on the minimisation of adverse events through improved prescribing.
Particular outcomes to be investigated include: overall and cause specific hospitalisation (inpatient and emergency department), use of primary care and diagnostic services, mortality and cause specific mortality, use of other medications, impact on prescribing quality, and health. The study participants will be linked to the National Death Index to obtain date and all causes of death.
Applicant: Australian Institute of Health and Welfare Approval valid until 30 September 2019
The aim of this project is to create a new national linked perinatal, birth and death data set for the purposes of analysing the factors affecting infant and child health outcomes in Australia. The data set will be created by linking unit record level data across jurisdictions from perinatal data collections, birth records and death records. Data Linkage will be undertaken between the NDI and state and territory perinatal and births data for deaths through to age 5 and beginning with births in 2003 to obtain data and all cause of death for this group.
Applicant: University of Adelaide Approval valid until 31 December 2015
The project involves follow-up with patients after EVAR from 1999 to 2011. The aim of this study is to collect data on mortality on the current cohort of patients who were enrolled in the NHMRC-fundeded EVAR trial. This data on post-operative mortality will be used to refine and validate the Endovascular Risk Assessment model. Identifying factors that predict early death would inform decisions on whether an EVAR procedure is the most appropriate for a patient, given their health status and anatomy of the Abdominal Aortic Aneurysm. Such a validated model will therefore be well placed to be used by surgeons and individual patients to make informed decisions on the risks and benefits of undergoing EVAR. Linkage to the National Death Index will be undertaken to establish date and cause of death.
Applicant: University of Sydney Approval valid until 31 December 2017
The project is an extension of a large multi-centre study which was completed in 2005 and assessed the effects of lipid-modifying medication among patients with Type 2 diabetes, with study participants being recruited from Australia, New Zealand and Finland. Linkage will be undertaken with the National Death Index to obtain fact, date and cause of death (for patients lost to follow up) and to the Australian Cancer Database to obtain cancer incidence.
Applicant: Kirby Institute, University of New South Wales Approval valid until 1 January 2016
Genital chlamydia infection is recognised as a major public health problem in women of reproductive age, with annual notifications in Australia rising four-fold in the last 10 years. The main control strategy is early detection and treatment, with a primary goal being to prevent longer term health consequences of the infection, however knowledge is incomplete. This study aims to provide robust estimates of the impact chlamydia infection has on longer term reproductive health consequences and involves record-linkage of key administrative health datasets.
A large cohort of women of reproductive age residing in the states of NSW and WA will be extracted from the Medicare Australia database. The cohort will be linked to Medicare Benefits Schedule data on chlamydia testing and treatment, and treatment of infertility; and to state based datasets including chlamydia notifications (to ascertain positive results from chlamydia testing), hospitalisation data (for infertility, ectopic pregnancy and other complications of early pregnancy) and midwifery data (for poor obstetric outcomes. The linked data collections will allow analyses to be conducted to examine rates of reproductive complications among women untested for chlamydia, and among women tested negative and positive for the disease. The results from this study should provide important. Information for planning and assessing the cost-effectiveness of future chlamydia control interventions.
The project has a well-defined data linkage strategy to protect the privacy of the women in the cohort. The AIHW will act in its role as an accredited Integrating Authority for the linkage of Commonwealth data. The Centre for Health Record Linkage (NSW) and the Western Australian Data Linkage Branch will facilitate the provision of state data. The researchers will have no access to the identifying information used for data linkage.
Applicant: Queensland University of Technology Approval valid until 1 August 2014
This study involves Prostate Cancer Specialist Nurses (PCSNs) in 13 locations across Australia. It compares health/health outcomes for patients treated for prostate cancer pre-PCSN versus post-PCSN implementation. Data linkage with the NDI for exclusion purposes only will be undertaken.
Applicant: Queensland Institute of Medical Research Approval valid until 31 December 2017
This project involves a cohort of 44,000 Queenslanders aged between 40-69 years with the primary aim of deriving measures of absolute risk and analysing causal factors for melanoma and other skin cancers. The cohort will be followed up by both re-contact and data linkage until at least 2020. Linkage will be undertaken with Australian Cancer Database, National Death Index, Medical Benefits Scheme and Pharmaceutical Benefits Scheme to establish date and cause of death.
Applicant: George Institute for Global Health Approval valid until 30 June 2016
The aim of this project is to evaluate the impact of adherence and non-adherence to prescribed medication to develop quality indicators of prescribing amongst patients who have been admitted to hospital for acute myocardial infarction (AMI). Linkage will be undertaken with the National Death Index for fact and date of death, and with selected Pharmaceutical Benefits Scheme records.
The aim of this study is to measure vaccine uptake and the factors associated with vaccine uptake and timeliness of immunisation. It will evaluate the effectiveness of currently available childhood vaccinations in reducing rates of vaccine preventable and non-vaccine preventable disease at a population level and for at-risk groups. It involves a large birth cohort in Western Australia and New South Wales (approximately 114,000 births). Linkage will be undertaken with a range of state based and Commonwealth based data sets including the National Death Index and the Australian Childhood Immunisation Registry.
Applicant: University of Canberra Approval valid until 28 February 2015
This project involves an evaluation of a Department of Health and Aging Nurse Practitioner Care Models of Care program which is funding 30 different models of delivering nurse practitioner (NP) services in aged care across Australia. The aim of the evaluation is to assess the effectiveness, economic viability and sustainability of NPs working in the different models from November 2012 to June 2014. One of the evaluation components involves an in depth study of 3,000 clients of NPs in each of 2012 and 2013. Linkage will be undertaken with the National Death Index and hospital morbidity data to enable analysis of the programs impact on the number and type of hospital admissions.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until 30 June 2017
This project is a 5 year prospective study established to examine the natural history of diabetes and its complications, including heart disease and kidney disease. It is a follow-up to a completed national diabetes prevalence study - the Australian Diabetes, Obesity and Lifestyle Study (AusDiab) and addresses some of the most important gaps that exist nationally and internationally in the understanding of the burden of Type 2 diabetes and related health problems. Data linkage to the NDI will be undertaken to determine causes of death for the 11,247 participants of the AusDiab population cohort.
The AIHW has sought approval for amendments to the existing National Cancer Statistics Clearing House (NCSCH) Protocol to allow for ongoing expansion in the scope of the Australian Cancer Database (ACD) without the need to seek an amendment from the AIHW Ethics Committee on small individual changes, such as slight changes in data linkage practices and slight changes to the NCSCH protocol necessitated by the development of the National Minimum Data Set for population-based cancer data.
Applicant: Flinders Medical Centre Approval valid until March 2012
The aim of this project is to examine the rate of prescription of risk factors reducing medications to patients with peripheral arterial disease or carotid disease. It will examine the influence that pharmacists have on prescription habits and determine whether they have an impact upon patient outcomes. A group of former Flinders Medical Centre patients will be linked with the National Death Index to obtain date and cause of death information.
Applicant: University of Queensland Approval valid until June 2012
The aim of this project is to investigate mortality and cancer incidence in Australian Defence Force personnel who have been deployed to the Middle East Area of Operations since 2001. Information on the ADF personnel will be linked with the National Death Index in order to obtain date and cause of death for those who have died, and with the Australian Cancer Database.
Applicant: Monash University Approval valid until March 2012
This study involves a comparison between the incidence of cancer and the survival rates of patients whom have undergone surgical weight loss with a similarly aged obese cohort. Information on a group of such patients will be linked with the National Death Index in order to obtain data and cause of death to determine rates of cancer mortality amongst the surgical weight loss cohort.
Applicant: University of Tasmania Approval valid until May 2011
This is a data integration study conducted by the Menzies Research Institute of the University of Tasmania and the Murdoch Institute of the Royal Children’s Hospital designed to investigate mortality and cause of death amongst the subjects of three Tasmanian studies: the Tasmanian Study of Cognition and Gait (TasCog), Tasmanian Older Adult Cohort (TasOac) and the Australian Diabetes, Obesity and Lifestyle (TasDiab). The TasCog and TasOac studies will be linked to the National Death Index, to obtain fact and cause of death and then link those results with the AusDiab study. The aim of the project is to derive information on significant risk factors contributing to mortality by contrasting the environmental and lifestyle factors contained within the Tasmanian surveys against the mortality information.
Applicant: Adelaide University Approval valid until July 2012
This project aims to examine mental health impacts following traumatic injury and the role of genetics in the development of post-traumatic stress syndrome (PTSD) and other post-trauma psychopathology. Previously, participants in this project have had their data collected at 3, 6 and 24 month intervals following injury. The current research aims to collect data at six years post injury to examine the long term outcome of injury through structured clinical interview over the telephone as well as completion of a questionnaire and a saliva sample to examine potential genetic contributors to PTSD. Their list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.
Applicant: Adelaide University Approval valid until June 2013
This study is the fifth phase of a longitudinal study, which commenced in 1983 following the Ash Wednesday Bushfires. The study is examining the long-term psychiatric outcomes of exposure to a major Australian bushfire in the context of other lifetime trauma, by using an unexposed control sample recruited at the time of the initial disaster. The list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.
Applicant: Monash University Approval valid until June 2012
This study is a prospective observational study of sedation and analgesic practices, level of sedation achieved, adequacy of pain relief and development of delirium during the intensive care stay of patients on a breathing machine. A list of patients will be linked to the National Death Index to obtain date of death in order to establish the survival status of patients 180 days after enrolment in the study.
Applicant: Burnet Institute Approval valid until 31 December 2013
This study is to quantify the population-level impact of opioid substitution therapy on mortality (both in prison and following release) and recidivism for opioid dependent prisoners in NSW. Data on participants in this study will be linked to the National Death Index, (45,700) to obtain date and all cause of death in order to analyse survival and risk of death by a range of factors.
Applicant: Barwon Health (University of Melbourne) Approval valid until June 2013
This project aims to examine fractures (hip and non-hip) and other exposures as risk factors for mortality, using data from the population-based Geelong Osteoporosis Study. The project previously related only to the female members in the study. The project has been expanded to include all people in the Study (males and females) to 31 December 2010, and to also investigate further exposures as risk factors for mortality. All people in the study will be linked to the National Death Index to obtain fact and date of death.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until June 2014
The aim of this study is to determine whether diabetes is associated with an increased risk of all cause and site specific cancer in Australians. Approximately 150,000 names (collected from 19 sites) will be linked to the National Death Index to obtain fact and date of death, age of death (in 5 year age group), causes of death and postcode at death, and with the Australian Cancer Database to obtain information on cancer diagnosis.
Applicant: Australian Institute of Health and Welfare Approval is ongoing
The National Diabetes Register is an on-going population-based register of people living in Australia with insulin-treated diabetes who began using insulin to manage their diabetes on or after 1 January 1999. Ongoing linkage will be carried out with the National Death Index in order to establish fact and date of death of the registrants.
Applicant: Australian Institute of Health and Welfare Approval valid until June 2012
The aim of this project is to validate the Indigenous status in the Enhanced Indigenous Mortality Database. The researcher will be testing the validity of the Indigenous status through linkage of the Enhanced Indigenous Mortality Database with the Native Title Services Corporation research database, a register of NSW Aboriginal people, informed by evidence from a wide range of sources of the connection between Aboriginal families and their traditional lands. The linkage of the Enhanced Indigenous Mortality Database and the Native Title Services Corporate database will take place at the Native Title Office and will be carried out by an AIHW staff member. A Project Advisory Committee has been established which will assess the integrity of the results of this research.
Applicant: Dept of Cardiac and thoracic Surgery, Flinders Medical Centre Approval valid until 1 April 2016
This project is to determine the association between health-related quality of life, clinical measures and long-term survival after heart surgery. Pre- and post-operative data and on patients admitted for heart surgery at the Cardiac and Thoracic Surgical Unit a Flinders Medical Centre will be linked with the National Death Index.
Applicant: The Australian Mesothelioma Registry Approval valid until August 2016
This study is to gain a better understanding of the exact relationship between asbestos exposure and mesothelioma. The Australian Mesothelioma Registry collects data of all new cases of mesothelioma diagnosed from 1 July 2010. The Registry monitors incidence and mortality, and identifies patterns of occupational and environmental asbestos exposure.
Linkage to the National Death Index will be carried out each year to obtain fact, state/territory, date and all causes of death in order to determine survival rates in relation to demographics, diagnosis information (such as type of mesothelioma) and cause of death.
Applicant: Menzies School of Health Research, Royal Darwin Hospital Approval valid until December 2015
This project is a follow up of the Diabetes and Related conditions in Urban Indigenous people in the Darwin Region (DRUID) study population to determine cardiovascular disease (CVD) and related outcomes (e.g. heart disease, strokes, diabetes and kidney disease deaths). The aim is to improve the understanding of CVD risk in Indigenous people, and develop better clinical tools to assist in CVD prevention and management. Linkage of the DRUID study population to the National Death Index will be undertaken to obtain date and all causes of death, and year and state/territory of registration.
Applicant: Centre for Vision Research, Dept of Ophthalmology, University of Sydney Approval valid until August 2012
This project is to assess medium and long-term mortality among older persons who had cataract surgery to correct visual impairment, and compare the mortality rate of older persons of similar age who remained with visual impairment due to cataract or other ocular diseases. Linkage of cataract surgery patients aged 64+ years from the Westmead Hospital Eye Clinic (2004–07) to the National Death Index will be performed to obtain fact of death, and date and cause of death.
Applicant: Heart Research Centre, Royal Melbourne Hospital Approval valid until September 2012
This study aims to determine predictors of CVD mortality for rural Victorians, and to assess the accuracy of current tools for measuring CVD risk in a rural population. Data from the Rural Risk Factor Prevalence Survey will be linked with the National Death Index to obtain information on mortality, including fact, date and cause of death and state/territory of death registration.
Applicant: Gynaecological Cancers Group, Queensland Institute of Medical Research Approval valid until December 2015
The Australian Ovarian Cancer Study (AOCS) is a population-based case-control study that has generated valuable new information regarding genetic and environmental risk factors for ovarian cancer. The majority of the patients in the study were diagnosed with ovarian cancer more than 5 years ago. The aim of the AOCS survival sub-study is to conduct a longitudinal follow-up of the AOCS group (about 4,100 participants) to evaluate the role of genetic and environmental factors in determining survival. Linkage of the group with the National Death Index will be performed to obtain date and all causes of death, and state/territory of registration.
Applicant: Prince of Wales Clinical School, University of New South Wales Approval valid until 31 July 2015
This study is to access and analyse tissue samples for three groups of people diagnosed with cancer for the purpose of examining the association between tumour factors and cancer incidence, and prognosis between groups with known immune deficiency and a control group with no known immune deficiency.
Linkage will be performed using two groups (one of people infected with Human Immunodeficiency Virus and the second of organ transplant recipients) and the Australian Cancer Database.
The Childhood Determinants of Adult Health (CDAH) Study is a follow-up to the 1985 Australian Schools Health and Fitness Survey (ASHFS), a nationally representative study of 8,498 children aged 7–15 years. Using data from repeated measures of lifestyle, physical characteristics and mental health collected since childhood, the study’s aims are to determine the contribution of childhood factors to the risk of developing cardiovascular disease (CVD), type 2 diabetes and depression in adulthood. The second followup (CDAH-2) has recently been completed and has collected information on risk factors for disease. Linkage of the study group to the National Death Index will be performed to obtain fact and date of death, and all causes of death.
Applicant: Department of Cardiothoracic Surgery, Royal Prince Alfred Hospital Approval valid until 15 November 2012
The aim of the study is to evaluate surgical outcomes of octogenarian patients undergoing conventional aortic valve replacement. The results will inform future clinical decision making and selection of patients for surgery. The study includes all patients who underwent surgery during a five-year period at two hospitals. Linkage to the National Death Index will be undertaken to obtain date and causes of death where applicable.
Applicant: Barwon Health Approval valid until November 2018
The Geelong Hospital ICU database contains complete clinical datasets for over 16,000 consecutive ICU admissions. Although it contains details of hospital outcomes it has no other long-term outcome data. Linkage of the database to the National Death Index will be undertaken to obtain date of death, all causes of death, and state and year of registration.
Applicant: Kirby Institute, University of New South Wales Approval valid until December 2012
This study aims to examine the 10 year mortality rates and causes of death in a NSW group of injecting drug users (IDUs) enrolled in the Hepatitis C Virus (HCV) Incidence Study. Linkage to obtain date and cause of death from the National Death Index will be undertaken. Matching was to be done by date of birth, gender and the first two letters of first name and of surname (rather than full name). IDUs are expected to have greater mortality than the general population.
Applicant: University Department of Paediatrics, Womens and Children's Hospital, Adelaide Approval valid until 30 December, 2012
The object of this part of the ARC-funded VALiD study is to determine whether there are increases in the incidence of admissions to hospital and/or attendances to Accident and Emergency departments for selected adverse events within a defined risk period following childhood vaccination. The Australian Childhood Immunisation Register will be linked with hospital and emergency department data from three states for children up to 7 years for the period from 2003 to 2010.
Applicant: Diabetes Australia Approval is ongoing
The National Diabetes Service Scheme (NDSS) is an Australia-wide program, established in 1987, which provides testing strips, syringes and needles at subsidised prices to people with diabetes. The scheme is administered by Diabetes Australia on behalf of DoHA. The NDSS database will be linked to the National Death Index to establish fact and date of death in order to maintain the database. This would ensure accurate reporting of diabetes statistics from the database, including the number of people using the scheme, and help ensure that Diabetes Australia does not send material to deceased registrants.
Applicant: McKinsey and Company Approval valid until June 2014
The Diabetes Care Project (DCP) is a three-year pilot of a new model of healthcare delivery designed to improve care for people with diabetes. A consortium, led by global management consultancy McKinsey and Company, has been appointed to deliver the pilot for the Department of Health and Ageing (DoHA). The pilot will involve up to 150 practices in three states, and will compare results between two intervention groups of general practices and a control group, to enable a rigorous evaluation of the outcomes. Participation will be voluntary for consumers and healthcare providers.
The project will evaluate whether new models of care can deliver better quality healthcare outcomes, enable care to be provided in more flexible ways, improve patient and practitioner experiences, and prove economically sustainable and scalable nationally. The project will test technology systems to enable better information sharing, a flexible funding model that will include improvement support payments for practices, a Care Facilitator role to manage the integrated care approach and an education and training program for consumers and healthcare professionals.
With patient consent, the project includes the linkage of data from the Medicare Benefits Scheme, Prescription Benefits Scheme, Hospital records and the National Diabetes Services Scheme.
The National Diabetes Register (NDR) is a population-based registry of people living in Australia who began using insulin to manage their diabetes on or after 1 January 1999. The NDR is linked to the National Death Index to establish fact and date of death of the registrants to inform analyses and also maintain the register for use in epidemiological or clinical studies. The linkage will now be carried out every six months.
Applicant: Baker IDI Heart and Diabetes Institute Approval valid until March 2014
This study involves the use of the Australian Cancer Database and using a prior cohort created through linkage with the National Death Index and Australian National Diabetes Service Scheme database in 2010 to determine whether individuals with diabetes are at an increased risk of suffering from cancer than those without diabetes.
Applicant: The Flinders University of South Australia Approval valid until November 2011
The project aims to measure the rate of suicide amongst worker’s compensation claimants in comparison to rates in segments of the South Australian population, assess relationships between suicide and characteristics of workers making compensation claims and identify risk factors for suicide amongst claimants. The research involves linkage to the National Death Index of approximately 640,000 cases of suicide in South Australia that occurred between July 1990 and June 2006 to obtain fact of death, all causes of death and jurisdiction in which the death occurred.
This project involves data linkage of subsets of the National Hospital morbidity database to enable annual calculation of rates of unplanned/unexpected readmissions for schizophrenia and bipolar disorder for the OECD Health Care Quality Indicators Data Collection 2010–2011 and for future years of the same collection.
Applicant: Austin Health Approval extended to December 2013
The aim of this project is to assess the predictive value of echocardiography in patients with diabetes against the current standard clinical and biochemical markers. A group of 400 patients with diabetes, who underwent echocardiography and blood sampling, were linked with the National Death Index to obtain date and cause of death.
The scope of the study is being expanded with a further linkage of this group to the National Death Index to enable further recruitment of participants and enable a 10-year analysis of adverse cardiac outcomes in all study participants.
Applicant: University of Queensland Approval extended to June 2012
This project is a cohort study of approximately 4,000 people with diabetes conducted by the University of Queensland Medical School. The study aims to understand the many factors that influence the health and well-being of people living with diabetes mellitus, and will identify social, health and lifestyle factors associated with quality of life for people with diabetes, and track their experience with the health care system.
Annual linkages were undertaken between 2009 and 2011 to the National Death Index to obtain fact and date of death, death registration year, death registration state, underlying cause of death and additional causes of death.
Applicant: Flinders Medical Centre Approval valid to April 2016
The researcher first sought approval on 25 May 2004 for the integration of a cohort of patients over the age of 80, who had undergone heart surgery, to be linked to the National Death Index to determine state of registration and date of death. The researcher in this application sought approval to integrate all patients who had undergone heart surgery to the National Death Index to obtain date, state of registration and all causes of death.
Applicant: Cancer Council Queensland Approval valid until May 2016
The Registry is a collection of information on the incidence, stage, treatment and survival of all children diagnosed with cancer, aged between 9 and 14 years, in Australia, since 1983. The researcher sought approval to continue ongoing integration with the National Death Index and also to access the Australian Cancer Database, on an ongoing basis, to obtain additional information (second and subsequent cancers in existing cases). The Committee noted that approval would be required from the States and Territory ethics committee and data custodians for access to the Australian Cancer Database. The Committee noted that the researcher sought approval for access to the ACD on an ongoing basis and granted approval to May 2016.
Applicant: Australian Institute of Health and Welfare Approval valid until April 2012
This project involves linkage of the Supported Accommodation Assistance Program and Juvenile Justice Data Collections and available jurisdictional child protection data to enable an analysis of movements between these sectors and of the characteristics of young people who are involved in more than one sector. Approval was extended to April 2012.
Applicant: Australian Institute of Health and Welfare Approval valid until March 2012
This project involves an extension of the NH&MRC-funded project Care pathways for older Australians (EC 410) which links national aged care data to inform key policy developments. It builds upon the previous project to include additional data to enable analyses that cover recent program initiatives, including extended aged care at home packages for people with dementia (EACH Dementia) and transition care. The inclusion of more data also enables more powerful longitudinal analyses and the analyses of trends over a longer time period.
The project involves updating the existing linked data set created for the Care pathways project up until 2007-08. The data sets being linked include those for aged care assessment, residential aged care, community aged care and extended aged care at home packages, home and community care, and veterans’ home care. Linkage to the National Death Index will also be done for the purpose of determining those aged care clients who have died. All data linkage will be carried out within the AIHW.
Applicant: Australian Institute of Health and Welfare Approval valid until August 2012
This project involves the linkage of data from the Community Mental Health Care National Minimum Data Set (supplied by jurisdictions to the AIHW) and Medicare Benefits Scheme claims data (provided by Medicare Australia or the Department of Health and Ageing) by the AIHW Data Linkage Unit. The linked dataset will be used for performance reporting under the National Healthcare Agreement. An extension was granted until August 2012 due to delays in obtaining approvals for access to the data.
This project involves the linkage of Residential Aged Care and National Hospital morbidity datasets 2008/09 using date of birth, sex, postcode, hospital and residential aged care episode characteristics, and dates of separation and admission in order to undertake analysis of movements between hospital and residential aged care facilities. The Residential Aged Care data is also being linked to the National Death Index to determine date and cause of death for those people who have died.
Applicant: Australian Institute of Health and Welfare Approval valid until December 2012
This project involves the linkage of state and territory perinatal data (approximately 37,000 records) for the period 1997 to 2009 with the National Death Index, to obtain date of death, place of death, pregnancy flag and cause of death and subsequent integration with the National Perinatal Data Collection for expert categorisation of deaths as direct, indirect or incidental deaths. The project is being extended to include data for 2009 and 2010 and also the following additional items from the perinatal collections: body mass index, number of antenatal visits PSANZ cause of death of baby, socio-economic index for areas, remoteness and assisted reproductive technology. Approval was granted.
This project is a further extension of the projects Care pathways of older Australians (EC 410) and Analysis of aged care programs (EC 2008-3-28, see above) funded by the Department of Health and Ageing. This work, like those projects, involves the linkage of data for six aged care programs as well as the National Death Index, in this case for a further three years from 2008-09 to 2010-11. The linkage will thus be updated with the most currently available data including recent program initiatives and expansions, to enable analyses of particular questions of policy interest regarding the patterns of use of aged care programs by older Australians. Particular analyses will focus on the characteristics of people who are eligible but don’t take up services or take up a different service than recommended, and whether the use of community services delay entry to permanent residential aged care.
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