All Australian families with children under 15 years who have a confirmed FASD diagnosis are invited to join the FASDAR.
The Australian Paediatric Surveillance Unit (APSU) which is affiliated with the University of Sydney, Faculty of Medicine and Health Sciences and the Sydney Children’s Hospital Network, has been collecting information about FASD since 2015 for entry into the FASDAR (Fetal Alcohol Spectrum Disorder Australian Registry).
The FASDAR is an important initiative to gather information on numbers of confirmed FASD cases, as well as related information including (but not limited to) the median age at time of diagnosis; percentages of cases notified from each state and whether the individual is in foster care. By having a database of children with FASD, clinicians and researchers are better able to understand these conditions and how best to monitor and manage them.
Currently there have been 1011 confirmed, de-identified FASD cases in children aged under 15 years reported to APSU, nation-wide that fulfill diagnostic criteria outlined in the Australian Guide to the Diagnosis of FASD. The median age of diagnosis was 8.5 years with the majority of the sample being male (67%), Aboriginal and/or Torres Strait Islander (55%), in foster care (45%), and being under the care of community or child protection services at any time (75%). Cases were notified from Western Australia (27%), Queensland (24%), New South Wales (23%), Victoria (12%), Northern Territory (11%), South Australia (2%), Australian Capital Territory (0.8%), and Tasmania (0.5%).
The APSU is aware that time-pressures on medical staff may have resulted in many cases not being entered into the FASDAR so a new feature “Save and continue later”, has been implemented in the online case report form as a result of feedback from clinicians. The FASDAR continues to seek clinician support to obtain family consent for inclusion of identifying data (e.g., child and carer names, contact details, treating doctor details) in FASDAR by providing them the Participant Information and Consent Forms, and seeking their consent to participate, or inviting them to contact us directly.
Collection of identified data has the additional benefits of enabling participation of families in research studies and clinical trials to improve the diagnosis, treatment, and prevention of FASD and evaluating prognosis. It also allows notification of educational opportunities, new clinical services, and new treatments for families. Data collected by APSU-FASDAR will inform clinical, diagnostic and treatment guidelines, policies and programmes to improve outcomes for children and their families.
Parents and carers can register directly with the FASDAR. NOFASD Australia strongly encourages those who are eligible, to consider registering with the FASDAR. The Participant Information and Consent Forms can also be found on the FASDAR website. For more information or to register
