The National Congenital Anomaly Advisory Group (NCAAG) provides expert clinical advice on re-establishing a national congenital anomalies data collection.
Terms of reference
- Provide expert advice and guidance on current and emerging congenital anomaly issues of relevance to the project.
- Provide expert advice regarding the national congenital anomaly data collection and the development of data set specifications (DSS) for the National Congenital Anomalies Data Collection (NCADC).
- Provide expert advice to identify the relevant issues and appropriate methods for national congenital anomaly reporting.
- Provide expert advice around establishment of a new national congenital anomalies collection, including guidance around ensuring a future data collection can provide data and evidence to inform policy, driving improvements in safety and quality in healthcare.
- Facilitate communication with professional bodies and other stakeholders where applicable to assist the Secretariat in progressing consultation on relevant items.
- Review draft reporting templates and draft reports and suggest revisions where appropriate.
- Provide expert advice identifying national congenital anomaly issues that should be considered for reporting and the means by which such data can be accessed.
- Provide expert advice regarding possible ways by which feedback can be given to:
- state and territory congenital anomaly collections, however named
- state and territory health departments.
- Receive and review ad-hoc out-of- session papers, updates and reports from AIHW and provide relevant feedback.
- The Committee will report through the Chair:
- to the overarching National Maternity Data Development Project Advisory Group for policy and strategic matters.
- to the Group Head, Data Strategies and Discovery Group, AIHW (or delegate) for functional matters.
The NCAAG comprises of a representative from each State or Territory, clinical experts, consumer representatives and the AIHW.
Other observers and temporary members may be invited on a transitory basis as their expertise is required.
The NCAAG is currently chaired by Professor Jeremy Oats, who is the Perinatal Advisor to the AIHW.
|Organisation||Name of representative|
|Chair of NCAAG and AIHW Perinatal Advisor||Prof Jeremy Oats|
|AIHW Perinatal Advisor||Prof Michael Humphrey|
|AIHW||Dr Fleur De Crespigny|
|AIHW||Ms Bernice Cropper|
|Commonwealth Department of Health and Aged Care||Ms Daniela Gagliardi|
|Department of Health ACT||Ms Rosalind Sexton|
|Department of Health ACT||Dr Farah Sethna|
|Department of Health NT||Ms Leanne O’Neil|
|Department of Health Queensland||Dr Trisha Johnston|
|Department of Health Tasmania||Mr Peter Mansfield|
|NSW Ministry of Health||Mr Tim Harrold|
|Safer Care Victoria||Prof Mark Umstad|
|Safer Care Victoria||Ms Joanna Gaston|
|Safer Care Victoria||Dr Shirin Anil|
|SA Birth Defects Register||Dr Catherine Gibson|
|SA Birth Defects Register||Ms Heather Scott|
|WA Register of Developmental Anomalies||Dr Gareth Baynam|
|Murdoch Children’s Research Institute||Ms Lisa Hui|
|Murdoch Children’s Research Institute||Dr George McGillivray|
|Royal Brisbane and Women’s Hospital||Assoc Prof Tim Donovan|
|Women's and Children's Hospital||Prof Yee Khong|
|Rare Voices Australia||Ms Nicole Millis|
|Syndromes without a name||Ms Heather Renton|
Secretariat support is provided by the AIHW Maternal and Perinatal Health Unit.
Contact details for the Secretariat are:
Secretariat, National Congenital Anomaly Advisory Group
Phone: (02) 6249 5054
Email: [email protected]