About FASD Australian Registry
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 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 run by 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
Kids Research Institute Australia, 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 ethics 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)
Meet the FASDAR Team
Professor Elizabeth Elliott AO
Chief Investigator FASD Australian Registry (FASDAR)
Professor Elizabeth Elliott AO is a Professor of Paediatrics at The University of Sydney and Consultant Paediatrician at the Sydney Children's Hospitals Network. She is a leading Australian researcher, clinician and advocate in the field of FASD, having led the development of the first Australian Guide to FASD Diagnosis in 2016, FASD Australia Hub, FASD Australian Registry (FASDAR) and contributed to national and World Health Organization guidelines on alcohol use in pregnancy. She is currently the Director of the FASD Research Australia NHMRC Centre of Research Excellence and is Chief Investigator of the FASDAR.
Dr Helen Cheng
Manager FASD Australian Registry (FASDAR)
Dr Helen Cheng is a Senior Research Fellow at The University of Sydney and the Marie Bashir Clinical Research Fellow in Adolescent Health at The Children’s Hospital at Westmead. As an Accredited Practicing Dietitian and exercise scientist, Helen has a broad research interest in child and youth health spanning the areas of FASD, complex illness and transition, obesity, chronic disease prevention and youth engagement. With her work, Helen aims to find the best ways to help support children and young people to optimise their health going into adulthood. Helen joined the team in 2026 as the Manager of the FASD Australian Registry (FASDAR), sharing this role with Dr Carlos Nunez.
Dr Carlos Nunez
Manager FASD Australian Registry (FASDAR)
Dr Carlos Nunez is a Research Fellow at the University of Sydney, where his work sits at the intersection of epidemiology and child health policy. As manager of the non-infectious research portfolio at the Australian Paediatric Surveillance Unit (APSU), he investigates the causes, risk factors, and burden of rare paediatric diseases — including fetal alcohol spectrum disorder — with the aim of translating this evidence into better prevention strategies and health care services for children. He also co-manages the FASD Australian Registry (FASDAR).