The FASD Australian Registry (FASDAR) would like to invi
te parents, carers and families of children living with FASD to participate by sharing information and their cases on the first national registry for FASD in Australia. The FASDAR is funded by the Australian Government Department of Health and is maintained by the University of Sydney.
The FASDAR has received ethical approval from the Sydney Children’s Hospitals Network Human Research Ethics Committee and the Australian Institute of Aboriginal and Torres Strait Islander Studies Research Ethics Committee to allow participant recruitment nationally.
Please note that all information provided to the registry will be under strict controls and no identified data will be released.
The FASDAR aims to collect detailed information about children under 15 years in Australia with FASD by maintaining a central database of cases.
The FASDAR will:
- Assist with the provision of information to families regarding new services, effective treatments, peer support, and resources when these become available;
- Enable longitudinal studies of FASD outcomes and participation in clinical trials when new treatments become available; and
- Support collection of national FASD data to monitor epidemiological trends and outcomes. These data will inform government departments, researchers, clinicians, and non-government bodies involved in service delivery, evaluation of treatments, and policy development for FASD.
NOFASD Australia encourages all parents, carers and families of children living with FASD to join the FASDAR, and take part in this exciting opportunity. For more information or to register your interest in the FASDAR.