Global Prader-Willi syndrome registry update

The Global Prader-Willi syndrome registry now has ~800 participants who complete (or have a parent/guardian complete) a series of 37 web-based surveys covering medical history, developmental history, behaviour, mental health, medications and quality of life. Registries are an incredibly important resource for researchers and clinicians to better understand Prader-Willi. Researchers provided an update on the progress of the Global Registry at the 2016 IPWSO conference which you can read below. Our thanks to IPWSO for allowing us to share these abstracts.

PWRFA is working to establish an Australian registry in collaboration with the Foundation for Prader-Willi Research and PWSAA, to enable better understanding of the challenges facing Australians living with Prader-Willi.