Fetal Alcohol Spectrum Disorder Australian Registry (FASDAR)
Australian families with children who have a confirmed FASD diagnosis and are under 15 years old are invited to participate in the FASDAR.
Why we need you
Your data is valuable. The FASDAR will be used to:
- Maintain a central database of FASD cases in Australia
- Inform better diagnosis, treatment and prevention of FASD
- Support development of better services and public health policy
- Provide families with information about new services, effective treatments, peer support and resources
- Enable recruitment into the clinical trials when new interventions become available
What does being part of the registry involve?
Families who enrol will be placed on our FASDAR database. Information about you and your child will be stored in our database and you will be contacted when there are research studies that you may like to be involved in. We will also update you about the progress of the FASDAR, new services, effective treatments, peer support and resources when these become available.
The FASDAR database is stored on a secure computer server at the University of Sydney. Only the FASDAR team has access to this information. Researchers and policy makers can request extracts of de-identified information but identified information on individuals will never be released to anyone. We will not publish any individual data. Any reports or publications produced using the FASDAR will only contain grouped summary data.
You can withdraw from the FASDAR at any time, including removal of data that you have already provided. However, please note that this will only be for data that has not been published. You do not need to provide a reason. Withdrawing will not have any negative consequences and will not impact that care your child receives from their health team.
For more information about the FASDAR, please visit the FASDAR website www.fasdregistry.org.au and review the Participant Information Sheet and Opt-In Consent Form
If you have any questions or would like to express your interest, please contact the FASDAR team:
Dr Tracey Tsang, FASDAR Manager
Email: tracey.tsang@sydney.edu.au
Mail: Australian Paediatric Surveillance Unit,
Locked Bag 4001, Westmead NSW 2145
Website: www.fasdregistry.org.au
RESOURCES FOR CLINCIANS
Australian Guide to the Diagnosis of FASD
To download a copy of the Australian Guide to the diagnosis of FASD please click here.
To access the E-learning modules please click here.
The E-learning modules include:
- Module 1: What is Fetal Alcohol Spectrum Disorder?
- Module 2: Alcohol use in pregnancy
- Module 3: Conducting a diagnostic assessment (includes 3 sub modules)
- Module 4: Referral and screening guidelines for FASD
- Module 5: Support and intervention after diagnosis
FASD Hub Australia
Information on Fetal Alcohol Spectrum Disorder (FASD) for Australian health professionals, teachers, justice professionals, service providers, researchers and caregivers
www.fasdhub.org.au
