Aims & Purpose
A registry is a collection of information about individuals with a specific diagnosis or condition
The aim of the Fetal Alcohol Spectrum Disorder Australian Registry (FASDAR) is to collect detailed information about children under 15 years in Australia with Fetal Alcohol Spectrum Disorder (FASD)
- There are many gaps in knowledge about FASD, including understanding about the long-term outcomes, how the condition progresses, and which programmes improve outcomes
The FASDAR seeks to improve the diagnosis, treatment, and prevention of FASD in Australian children
Data from the FASDAR will inform clinical, diagnostic and treatment guidelines, policies, and programmes to improve outcomes for children with FASD and their families
The FASDAR will support recruitment for future research studies and clinical trials, as well as the provision of information to families regarding new services, peer support, effective treatments, and resources when these become available
We invite all Australian families with children living with FASD to join the FASDAR
By having a unified national FASD registry, we will have a platform for patients, families, clinicians, researchers, government, and industry to work together to discover new interventions and advance knowledge for these conditions
Development & Funding
Work on the FASDAR started in 2015 when the Australian Government Department of Health requested our research team at the University of Sydney to develop a national registry for FASD
The FASDAR continues to receive funding from the Department of Health for its maintenance
The development and maintenance of the FASDAR is a collaborative effort between a number of organisations – find out more below
Partners & Governance
The FASDAR is being run through the University of Sydney and the Australian Paediatric Surveillance Unit (APSU) in Westmead by the FASDAR team
The FASDAR is supported by a number of organisations, clinicians, and FASD-informed clinics across Australia; our collaborators are from the following organisations:
National Organisation for FASD (NOFASD) Australia
Telethon Kids Institute, WA
The University of Queensland, QLD
The Menzies School of Health Research, NT
The CICADA Centre FASD Service, NSW
Royal Far West, NSW
Gold Coast Health, QLD
Victorian Fetal Alcohol Service, VIC
Women’s and Children’s Health Network, SA
PATCHES Paediatrics, WA
FASD C.A.R.E., WA
Royal North Shore Hospital, NSW
The FASDAR team works closely with two governance groups to ensure the Registry is ethically and clinically sound; members of these groups are representatives from the above collaborating organisations
The National Steering Group provides clinical, technical, and research expertise to inform maintenance of the FASDAR, and offers a consumer/family perspective to ensure input from or on behalf of people living with FASD
The Data Custodian Committee reviews applications for access to FASDAR data from research groups, clinical services, government departments and non-government bodies
The FASDAR has received approval from the following bodies:
Sydney Children’s Hospital Network, Human Research Ethics Committee (project reference: HREC/17/SCHN/209)
Sydney Children’s Hospital Network, Research Governance Office (project reference: 2019/STE15444)
Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS), Research Ethics Committee (project reference: EO144-10092019)