Research on many aspects of Prader-Willi Syndrome (PWS) is carried out around the world. Research is essential to help people with PWS have a better life.
Keep up to date with research results and inform your service providers if relevant.
The PWSAA is a strong supporter of ethical research. PWSAA would encourage you and your family member to participate, if any opportunites from trusted institutions come up.
Find research and results
Prader-Willi Research Foundation of Australia – This registered charity is dedicated to improving clinical outcomes and delivering better treatments for people living with Prader-Willi Syndrome. There is a very interesting blog and Facebook page with the latest findings.
Foundation for Prader-Willi Research – Started in 2003 by parents of children with PWS, the mission of FPWR is to improve the lives of our children and secure their future through the advancement of research on PWS.
International Prader-Willi Syndrome Organisation (IPWSO) Scientific Papers and Research catalogue – Covers many topics; Updated quarterly.
PWSA USA research page gives an overview of research activities.
PubMed US National Library of Medicine – Search by topic, author or journal (Enter Prader-Willi Syndrome in search). Learn how to use PubMed to get email alerts for new article and journal abstracts.
Garvan Institute Australia – has conducted clinical research in several areas of PWS .
Particpate in PWS research
Global Prader-Willi Syndrome Registry – explanatory video
The purpose of the registry is to develop a comprehensive database of individuals with PWS, to better understand the full spectrum of PWS characteristics. It will help get clinical trials completed more quickly, and to determine areas of research which will point to treatments to improve the lives of those affected by PWS.