Summary
Birth anomalies remain a significant public health problem in Australia. They often result in disabilities and are a major reason for hospitalisation in infancy and childhood and are a leading cause of infant mortality. Despite this, we do not have quality national data on birth anomalies in Australia.
The national collation and reporting of birth anomalies data has been suspended in recent years due to concerns about data quality and comparability. In response to the AIHW's continuing commitment to birth anomalies as a core data collection, a review was conducted over the last year which was aimed at assessing the utility and scope of the National Congenital Malformations and Birth Defects Data Collection and making recommendations for its future.
The key findings of the review were that there is a lack of national consistency in birth anomalies data and that this affects the quality and utility of the national collection. There is variability among the states and territories in the scope of their birth anomalies data collections, the sources of birth anomalies notifications, the definitions and classifications used, the method of data collection and the available resources. There is also variability among the states and territories in the timing and method of the provision of birth anomalies data to the AIHW National Perinatal Statistics Unit (NPSU) for national collation and reporting.
In order to achieve national consistency and to develop a high quality national birth anomalies data collection, it was recommended that initially the scope of the new Australian Birth Anomalies System should be data for birth anomalies detected up to 1 year of age, including data on terminations of pregnancies with birth anomalies, regardless of gestational age (i.e. including <20 weeks gestation). This scope was considered to be better practice by the review and internationally. Therefore the system will initially be based on data from the states able to detect birth anomalies at least up to 1year of age, with a view to further extending the period of detection in the future. These states are New South Wales, Victoria, Western Australia and South Australia. It was recommended that a timeframe for the other jurisdictions to progress their collections be developed.
In addition, a significant program of data development will need to be undertaken to achieve national standardisation of the data and clinical definitions used and the classification of birth anomalies, with the objective of the development of a National Minimum Data Set. Work to identify the conditions to be included in the collection will also be undertaken.
A critical outcome of this review was the reinforcement of the need to enhance partnerships with data providers, experts in the field, governments and consumers. This will be pivotal in developing the structure and content of the new national report. It is intended that this revised report will be based on data for 1998-2001and will be released in June 2005. The timing reflects factors such as multiple sources of notification of birth anomalies and the need to enhance data quality and completeness of the collection.
A technical steering committee will be convened to assist with this work.