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Data Collection Overview

Australian Congenital Anomalies Monitoring System (ACAMS)

Data Collection Sources

State and territory perinatal collections or registers of congenital anomalies or birth defects. NSW, VIC, WA and SA have congenital anomaly registers. In QLD, TAS, and the ACT information on congenital anomalies is collected with perinatal data. The NT has no congenital anomaly collection.

Institutional environments

ACAMS is an Australian Institute of Health and Welfare (AIHW) data collection. The AIHW is Australia's national agency for health and welfare statistics and information. The role of the AIHW is to provide information on Australia's health and welfare, through statistics and data development which inform discussion and decisions on policy and services.the AIHW works closely with all state, territory and Commonwealth Government health authorities in collecting, analysing and disseminating data. However, the AIHW is an independent statutory authority within the Health and Ageing portfolio, and is responsible to the Minister for Health and Ageing. The AIHW is governed by a Board, which is accountable to the Commonwealth Government through the Minister.
States and territories supplied these data under the terms of the National Health Information Agreement (721KB DOC).
Data specifications for the Perinatal NMDS are documented in the AIHW online metadata repository, METeOR.

Relevance and Scope

The scope of the ACAMS data set is all major congenital anomalies detected in Australia among births (live births and stillbirths of at least 20 weeks gestation or 400g birthweight) detected during pregnancy, at birth or in childhood, and among pregnancies terminated at all gestational ages. Congenital anomalies are restricted to structural anomalies and a list of minor anomalies is available.
ACAMS is a collation of data supplied from individual state and territory collections. The collections in each jurisdiction vary in scope, the range of conditions that are included, the age up to which surveillance continues and the data collection practices. The prevalence of congenital anomalies among births is affected by the availability and use of prenatal screening programs and diagnostic testing services and individual choices regarding continuation of an affected pregnancy. Only NSW, VIC, WA and SA are able to provide information about congenital anomalies among pregnancy terminations performed at less than 20 weeks gestation. These variations will impact differently on individual conditions included in the national collection.


The latest report, Congenital anomalies in Australia, was published in 2008 using data from 2002–2003.


ACAMS is an evolving data collection. A program of national data development is underway to develop a Data Set Specification, which will form the basis of a National Minimum Data Set for congenital anomalies. Clinical definitions were developed in conjunction with the Australian Paediatric Surveillance Unit. These initiatives will improve the quality of national information on congenital anomalies in the future.


Congenital anomalies in Australia is available in hard copy or online. Various products that draw upon the ACAMS have been published including Congenital anomalies in Australia and Indigenous mothers and their babies.
Ad hoc data are also available on request (charges apply to recover costs).


Supporting information on the use and quality of the ACAMS is published in Congenital anomalies in Australia. Readers are advised to read caveat information to ensure appropriate interpretation of data.

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