The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% with 208 new participants! Individuals involved in the Registry have been very active, completing more than 8,500 surveys during the past year.
Participants in the Global PWS Registry reside in more than 60 countries throughout the world with the United States being the most represented country, followed by Canada, the United Kingdom, and Australia. Approximately half of the Registry participants are between the ages of 6-17 years old. Importantly, participation is increasing among young adults (18 and older) with PWS. Information from this subset of the PWS community is critically important to guiding clinical care and improving our understanding of aging in PWS.
Data from the Global PWS Registry is actively being used by the PWS research community to help advance research, clinical care, and therapies for PWS. Clinicians and academics have analyzed Registry data on topics including vision issues in PWS, and aspects of mental health in PWS. These will be published in the peer-reviewed medical literature in the coming months, so stay tuned for announcements and links once available! Registry data also continues to be a critical resource for drug companies developing therapies for PWS. Registry data is helping frame an understanding of the natural course of PWS as companies engage with the FDA.
Thank you to all of the PWS families who continue to share their PWS journey through the Registry. For more information on the Global PWS Registry, including how to join or to update your surveys, please visit pwsregistry.org or email the Registry here.