Dr Melissa Cheung, Research Fellow at the University of Sydney and Fetal Alcohol Spectrum Disorder Australian Registry (FASDAR) manager:
Hello. I am Melissa Cheung, a Research Fellow at the University of Sydney. I work in the Australian Paediatric Surveillance Unit on several Fetal Alcohol Spectrum Disorder (FASD) related research projects. One of these projects is the FASD Australian Registry, FASDAR for short, where I am the Registry Manager.
[Text is displayed on the screen] What is the aim of the FASDAR?
Dr Melissa Cheung:
While FASD is a significant public health concern globally, there is currently limited information about FASD in the Australian population.
The FASDAR aims to fill this gap by collecting national FASD data to monitor trends and outcomes in the Australian population through maintenance of a central database of cases.
[Text is displayed on the screen] How will the FASDAR be used to help children and families?
Dr Melissa Cheung:
The FASDAR will assist with the provision of information to families regarding new services, effective treatments, peer support, and resources when these become available.
It will also enable longitudinal studies of FASD outcomes and participation in clinical trials when new treatments become available.
The FASDAR will support collection of national FASD data, which will inform government departments, researchers, clinicians, and non-government bodies involved in service delivery, evaluation of treatments, and policy development for FASD.
This is an exciting opportunity and is the first national registry for FASD in Australia.
We have now started recruitment, so I encourage families with children aged less than 15 years with a confirmed FASD diagnosis to join the FASDAR.
For more information or to contact us, please visit our website fasdregistry.org.au.