National Perinatal Data Collection
The NPDC is a national collection of data on pregnancy and childbirth. The data are based on births reported to the perinatal data collection in each state and territory in Australia. Midwives and other birth attendants, using information obtained from women and from hospital or other records, complete notification forms for each birth. A standard de-identified extract is provided to the AIHW on an annual basis to form the NPDC.
The NPDC has birthweight and gestational age conditions for records included as live births and stillbirths. This means a very small number of live births occurring before 20 weeks’ gestation and weighing less than 400 grams are not included in the NPDC. Data for babies whose gestational age and birthweight were not recorded are also not included. Live births and stillbirths may include terminations of pregnancy after 20 weeks’ gestation. There are variations in legislation regarding termination of pregnancy between states and territories, and the recording of terminations is likely to be incomplete.
More information about the NPDC can be found in the data quality statement.
State and territory data collections
Data for the NCADC are sourced from state and territory congenital anomaly registers and perinatal and admitted patient data collections. There are differences in the collection method and scope of these collections, for example the anomalies that are in scope for collection, the availability of and inclusion of terminations of pregnancy data, and the age at which cases can be notified for inclusion.
Collection and reporting may also be affected by the availability and use of prenatal screening programs and diagnostic testing services, and whether the results of these are notified to congenital anomaly collections. Key information about these collections is summarised in Table 2, with more detail available in the information sheet (PDF 120kB).
| Jurisdiction(a) | Collection name | Scope | Notification period | More information | Reports |
|---|---|---|---|---|---|
| New South Wales(b) |
|
Scheduled congenital conditions(c) detected in a fetus during pregnancy or in a child up to 1 year of age. Includes conditions detected in:
|
Before birth to 1 year of age | NSW Register of Congenital Conditions – Reporting Requirements | HealthStats NSW Publications |
| Victoria | Victorian Congenital Anomalies Register (VCAR) |
Notifications of congenital anomalies in children from before birth to 6 years of age. |
Before birth to 6 years of age | Congenital anomalies | Better Safer Care |
Congenital anomalies in Victoria 2015–16 | Better Safer Care |
| Queensland |
Congenital Anomaly Linked File (CALF) Data from the Queensland Perinatal Data Collection is linked with Hospital Admitted Patient Data Collection, ABS Cause of Death and Death Registration Data. |
Includes:
|
Birth to 5 years of age | Statistical Services Branch | Queensland Health |
Statistical Services Branch Data Dashboards | Queensland Health |
| Western Australia(d) | Western Australian Register of Developmental Anomalies (WARDA) |
A developmental anomaly is defined as: cerebral palsy or a structural or functional anomaly which is present at conception or occurs before the end of pregnancy and is diagnosed during pregnancy, or after stillbirth or termination of pregnancy, or after live birth, but before 6 years of age. |
Before birth to 6 years of age |
Western Australian Register of Developmental Anomalies (healthywa.wa.gov.au) WA Register of Developmental Anomalies (WARDA) (health.wa.gov.au) |
2014 Annual Report of the WA Register of Developmental Anomalies (health.wa.gov.au) |
| South Australia | South Australian Birth Defects Register (SABDR) |
A birth defect is any abnormality, structural or functional, identified up to 5 years of age, provided the condition had its origin before birth. Includes:
|
Before birth to 5 years of age | Women's and Children's Hospital, Birth Defect Register (wch.sa.gov.au) | Birth Defects in South Australia 2016 (wch.sa.gov.au) |
| Tasmania |
|
Any structural or anatomical abnormalities of the baby that are present at birth, in either a liveborn or stillborn baby, and diagnosed before separation from care. Only anomalies diagnosed before discharge from the birthing hospital are included in the collection. |
Birth to discharge from birthing episode |
Tasmania does not routinely collate or report this data but has extracted for the NCADC. Council of Obstetric and Paediatric Mortality and Morbidity | Tasmanian Department of Health |
n.a. |
| Australian Capital Territory |
|
Includes congenital anomalies identified on the perinatal form and from hospital separations using relevant ICD-10-AM codes. |
Birth to 1 year of age |
The ACT does not routinely collate or report this data but has extracted for the NCADC. Data collections | Health (act.gov.au) |
n.a. |
| Northern Territory | NT Perinatal registry |
The diagnosis of a structural of functional abnormality in a child up to 12 months of age that was present from conception or that occurs before the end of pregnancy. Includes
|
Birth to 1 year of age | Perinatal registry | NT Health |
- NSW use their register and admitted patient data collection to report on notifications of congenital anomalies to the NCADC.
- Scheduled congenital conditions include: all structural malformations; chromosomal abnormalities; and 4 medical conditions (cystic fibrosis, phenylketonuria, congenital hypothyroidism and thalassaemia major). Conditions that are not notifiable include: minor anomalies occurring in isolation; birth injuries; congenital infections which do not result in a structural malformation; tumours and cysts; and conditions arising from prematurity or asphyxiation.
- Western Australia collects congenital anomalies data through the Western Australian Register of Developmental Anomalies, however, data for 2017 were not supplied to the NCADC in time for reporting.