– Limited information is currently available about the incidence and prevalence of Fetal Alcohol Spectrum Disorders (FASD) in Australia and internationally. This lack of data reflects the low level of awareness by clinicians of FASD conditions, the complexity of diagnosis and the absence of nationally agreed and consistent diagnostic criteria and definitions.
– The quality of information available in existing data collections is variable and incomplete for ascertaining Fetal Alcohol Syndrome cases. There is no information available on other disorders in the spectrum.
– Regular surveillance and monitoring have been identified as priorities for determining incidence and prevalence. It is considered that the most feasible medium-term model for FASD data collection is to enhance the scope of national and jurisdictional congenital anomalies collections to include FASD.
– In the short term, a program of data development regarding FASD and the use of record linkage to monitor ‘statistical FASD’ will provide more complete data than are availablenow. A national data repository on FASD would enable appropriate resources and services to be delivered to those affected (and their families), as well as providing support to researchers and clinicians.