The Global PWS Registry launched in 2015 as a central repository of caregiver and patient entered data about living with PWS. The goals of the Registry are to better understand the full spectrum of PWS symptoms, expedite the completion of PWS clinical trials, determine areas of needed research and treatments, and develop standards of care in PWS.
Since 2015, over 2000 participants have joined the Registry from around the world, and more than 52,000 surveys have been completed. Data from the Registry has been used in numerous impactful ways including but not limited to: several publications in the medical literature; meetings and submissions to the FDA; and supporting the development of new endpoints for clinical trials in PWS.
The activities of the Registry are overseen by the Global PWS Registry Advisory Board, which is tasked with ensuring that the Registry is being used in accordance with the approved protocol, and that research done through the Registry is conducted with high scientific, professional, and ethical standards, and in a way that serves the best interests of the PWS patient community. The Advisory Board has established Registry policies and reviews the applications from outside parties such as clinicians, researchers, and pharmaceutical companies, who are requesting de-identified registry data for research purposes. The Advisory Board ensures that these research requests are in keeping with the goal of the Registry to improve the lives of those with PWS.
2023 brings some changes to the membership of the PWS Registry Advisory Board and we would like to extend our sincerest gratitude to the individuals below who volunteered their time over the past several years to support the work of the Global PWS Registry.
Outgoing members of the Registry Advisory Board include:
- Jessica Duis, MD, a pediatric geneticist, special care pediatrician, and PWS expert at Children’s Hospital of Colorado
- Suzanne Fuller, parent to an adult with PWS
- Stacy Ward, M.S., Director of Family Support with PWSA|USA
- Diane Webster, PhD, Research Director at the Prader-Willi Research Foundation of Australia
Three members will continue to serve on the Registry Advisory Board:
- Andrea Haqq, MD, an endocrinologist and PWS expert at the University of Alberta, Canada
- Christopher Jones, iTakeControl, industry expert in rare disease real world data and outcomes research
- Jessica Howard, parent to a teenager with PWS
We are excited to welcome four new members joining the Registry Advisory Board:
- Amy McDougall, MS, mom to a teenager with PWS, School Psychologist, and Board Member of the Prader-Willi Alliance of NY (PWANY)
- Nathalie Kayadjanian, PhD, Scientific Advisor for the Raymond A. Wood Foundation and member of the Board of Trustees for the International Prader-Willi Association (IPWSO)
- Carole Elkhal, mom to a child with PWS, and Community Director at Foundation for Prader-Willi Research Canada
- Sani Roy, MD, an endocrinologist and Endowed Chair for comprehensive care of PWS at Cook Children’s Medical Center in Fort Worth, Texas
We look forward to working with the new and continuing members of the Global PWS Registry Advisory Board to effectively use the data from our PWS community to support studies that will improve the health and well-being of those with PWS.