About the NCADC

In 2019, the AIHW formed the National Congenital Anomaly Advisory Group (NCAAG) to help it to re-establish a national congenital anomalies data collection, or NCADC. The AIHW had not collected congenital anomaly data from jurisdictions since 2008, due to a lack of consistency in the data affecting the quality and utility of the collection. Collecting national congenital anomaly data supports appropriate health-care planning and funding for treatment and diagnosis, as well as supporting research to develop better diagnostic, preventative and treatment measures. Appropriate health-care may stop death occurring and improve short and long-term health.

The NCAAG agreed the AIHW would collect 2016 birth cohort data from jurisdictions, these being the most complete data available across jurisdictions, as part of a re-established national collection. More information about the NCADC can be found in ‘Technical notes’.

What data can be reported?

Congenital anomalies data for 2016 were the most recent data available nationally and could be supplied by all jurisdictions, except Western Australia and the Northern Territory. The reporting scope includes over 400 congenital anomalies that have significant medical, social or cosmetic outcomes for an individual, that were diagnosed in the 2016 birth cohort up to 12 months of age. Rates are based on all births (live births and stillbirths) reported to the National Perinatal Data Collection (NPDC) for the 2016 birth cohort (excluding births in Western Australia and the Northern Territory).

It is not possible to provide national data on all anomalies diagnosed in the 2016 birth cohort. Data from Western Australia and the Northern Territory were not available and data from the 6 reporting jurisdictions needed to be harmonised for reporting. The following cases were excluded to improve consistency in the data reported across jurisdictions:

  • terminations of pregnancy before 20 weeks’ gestation
  • anomalies diagnosed after 12 months of age
  • anomalies that did not have significant medical, social or cosmetic outcomes —these are sometimes referred to in other literature as minor congenital anomalies 
  • anomalies where data were not available across all reporting jurisdictions.

The numbers and rates presented will therefore underestimate the prevalence of congenital anomalies in Australia. It is estimated that around 12–17% of anomalies are diagnosed after 12 months and before 6 years of age (Bower et al. 2010, Gibson et al. 2016). This may be lower or higher depending on the type of anomaly.

A list of the anomalies included in this report (in scope anomalies) and their respective ICD-10-AM codes are in ‘Reporting inclusions’ and this attachment (PDF 320kB). Anomalies are grouped by body system. A list of anomalies excluded from reporting ‘Reporting exclusions' (PDF 365kB) are also available.

Every effort has been made to collect and report data consistently by using common data specifications and reporting on a similar notification period across jurisdictions. There are differences however in the scope and methods used to collect congenital anomalies data across jurisdictions. More information about these and their impacts can be found in 'Technical notes'.

References

Bower C, Rudy E, Callaghan A, Quick J and Nassar N (2010) Age at diagnosis of birth defects, Birth Defects Research. Part A, Clinical and Molecular Teratology, 88(4): 251–255. https://doi.org/10.1002/bdra.20658

Gibson C, Scott H, Haan E and Scheil, W (2016) Age range for inclusion affects ascertainment by birth defects registers Birth defects research. Part A, Clinical and molecular teratology, 106(9): 761–766. https://doi.org/10.1002/bdra.23534