A website providing the latest research and resources on Fetal Alcohol Spectrum Disorder (FASD) is helping parents, educators, health professionals and policy makers navigate the complexities of the neurodevelopmental impairment condition.
The FASD Hub is a one-stop-shop to improve access to the evidence base for FASD in Australia and houses the most comprehensive and credible resources, tools, videos and stories to build awareness of FASD. It also hosts a directory of services and clinics offering FASD assessment and diagnosis across Australia
Born out of a national action plan to increase awareness and prevent prenatal exposure to alcohol, the FASD Hub website was launched in 2017 by a collaboration led by The Kids Research Institute Australia and the University of Sydney in partnership with the Menzies School of Health Research, the National Organisation for Fetal Alcohol Spectrum Disorder, and the Australian and New Zealand FASD Clinical Network.
Leading paediatrician and FASD Hub Advisory Group Chair, Professor Elizabeth Elliott AM, said the creation of the FASD Hub had been critical.
“Before it was established, there was no single destination for credible, evidence-based resources about FASD for clinicians, researchers, and policy makers,” Professor Elliott said.
“Many resources were available only in hard copy, were from overseas, and were limited to certain jurisdictions – meaning different people had access to different information. The FASD Hub set out to change this – and to showcase Australian data for the local context.”
FASD is the leading preventable non-genetic developmental disability in Australia and can occur when a person is exposed to alcohol before birth. People with FASD can experience difficulties with physical activities, language, memory, learning and behaviour. About one in five people with FASD have distinctive facial features and others have a range of birth defects. People with FASD have their own individual strengths and interests, but all experience a degree of difficulty in everyday activities and will need additional support to thrive.
In Australia, FASD is underdiagnosed and often misdiagnosed.
The FASD Hub Australia was launched by the FASD Research Australia Centre of Research Excellence under the leadership of The Kids Research Institute Australia Emeritus Professor Carol Bower AC and The University of Sydney Professor Elizabeth Elliott AM.
Next steps
An evaluation of the FASD Hub Australia website has found that 92% of visitors were likely or very likely to recommend the FASD Hub to colleagues, acting as central resource which hosts:
- 104 Australian resources around FASD, alcohol and pregnancy
- 399 Australian publications
- 102 FASD-informed services and clinicians
- eLearning modules which have been completed by nearly 2,000 health professionals to date fasdhub.org.au