Australian Institute of Health and Welfare (2022) Congenital anomalies 2016, AIHW, Australian Government, accessed 04 July 2022.
Australian Institute of Health and Welfare. (2022). Congenital anomalies 2016. Retrieved from https://www.aihw.gov.au/reports/mothers-babies/congenital-anomalies-in-australia-2016
Congenital anomalies 2016. Australian Institute of Health and Welfare, 01 April 2022, https://www.aihw.gov.au/reports/mothers-babies/congenital-anomalies-in-australia-2016
Australian Institute of Health and Welfare. Congenital anomalies 2016 [Internet]. Canberra: Australian Institute of Health and Welfare, 2022 [cited 2022 Jul. 4]. Available from: https://www.aihw.gov.au/reports/mothers-babies/congenital-anomalies-in-australia-2016
Australian Institute of Health and Welfare (AIHW) 2022, Congenital anomalies 2016, viewed 4 July 2022, https://www.aihw.gov.au/reports/mothers-babies/congenital-anomalies-in-australia-2016
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Due to rounding, percentage totals may not add to 100%.
A baby may have more than one type of anomaly and be counted in more than one type of anomaly category. A baby will only be counted once within each anomaly category. Given this, the sum of individual categories will be greater than the total number of babies with any anomaly.
Every effort has been made to collect and report congenital anomalies data consistently, by using common data specifications and reporting using a similar notification period across jurisdictions. It should be noted, however, that there are differences in the scope and methods used to collect congenital anomalies data across jurisdictions, for example the sources of notification for congenital anomalies varies by jurisdiction (see Table 3).
Note: Due to rounding, percentage totals may not add to 100%.
Differences in collection methods may impact national counts and comparability between jurisdictions. For example, in 2016:
More information about the NCADC can be found in the data quality statement.
The scope for reporting from the NCADC may be different to the scope for reporting from jurisdictional congenital anomaly collections. The AIHW harmonised the national data for reporting around the classification system and the notification period used, and the anomalies included for reporting. This means the numbers and rates in this report may differ from those reported by individual jurisdictions.
Differences between national and jurisdictional reporting may be due to:
See Table 2 for further information on jurisdictional congenital anomaly reporting.
The term ‘women giving birth’ is used when referring to mothers, whereas ‘babies’ refers to births.
Data are presented on babies with in scope congenital anomalies in the 2016 birth cohort, that were diagnosed up to 12 months of age and the women who gave birth to these babies (see ‘Reporting inclusions’). It is not possible to provide national data on all cases diagnosed in the 2016 birth cohort, due to differences in collection methods across jurisdictions. This report does not include anomalies that were:
Anomalies were also excluded where data were not available across all reporting jurisdictions, or if they did not have significant medical, social or cosmetic outcomes—these are sometimes referred to in other literature as minor anomalies (see 'Reporting exclusions').
The numbers and rates presented will therefore underestimate the overall 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. Analysis of the data supplied in 2016 by South Australia indicates around 10% of anomalies in their 2016 birth cohort were diagnosed after 12 months of age and would be excluded from this national report.
This report is based on the most recent data available across reporting jurisdictions. Data in the NCADC are sourced from various state and territory data collections and collection methods vary. Each collection involves data entry, classification and validation and may include data linkage processes. Some congenital anomalies data collections have long notification periods (up to 5 or 6 years of age), which means the data for a particular birth cohort may take years to finalise. Jurisdictions have noted the following issues in the supply of congenital anomalies data:
The collection of anomalies data is mandated in only 3 jurisdictions. There are resource implications for jurisdictions to develop and maintain a congenital anomalies collection.
Cases are difficult to ascertain due to their low prevalence rates. Jurisdictions have different methods of case ascertainment and rely on multiple data sources to identify cases of congenital anomalies. There may be timeliness issues around getting data from these different sources and following up sources for case ascertainment. Linkage with other data collections, while improving case ascertainment, may also affect the timely supply of anomalies data as data will need to go through de‑duplication and validation processes.
Timeliness is also dependent on the notification period used. For some congenital anomaly collections (for example, those that collect data until 6 years of age), birth cohort data are incomplete for the first few years.
The Australian Congenital Anomalies Monitoring System (ACAMS) is an AIHW collection containing data on babies with a diagnosed congenital anomaly between 1981 and 2003. The most recent reports from this collection were published in 2007 (Abeywardana et al. 2007), 2008 (Abeywardana and Sullivan 2008) and 2011 (Macaldowie and Hilder 2011). Data in this report are not directly comparable with previous ACAMS reports, due to differences in scope and the period of notification used.
Abeywardana S, Karim M, Grayson N and Sullivan EA (2007) Congenital anomalies in Australia 1998–2001, Congenital anomalies series no. 2, Cat. no. PER 37, Sydney: AIHW National Perinatal Statistics Unit.
Abeywardana S and Sullivan EA (2008) Congenital anomalies in Australia 2002–2003, Birth anomalies series no. 3, Cat. no. PER 41, Sydney: AIHW National Perinatal Statistics Unit.
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
Macaldowie A and Hilder L (2011). Neural tube defects in Australia: prevalence before mandatory folic acid fortification, Cat. no. PER 53, Canberra: AIHW.
The AIHW is working to re-establish a national congenital anomalies data collection. The collection and reporting of congenital anomalies data will assist in monitoring prevalence and trends in congenital anomalies and in planning services for these conditions. There are differences in the way cases are identified across jurisdictions and this will affect both jurisdictional and national counts. Further work is needed to standardise congenital anomalies data across jurisdictions. The next phase of work includes improving both the consistency and timeliness of data provided to the NCADC, supporting the inclusion of data from Western Australia and the Northern Territory into the collection, and embedding collection and reporting processes.
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