Empowering Families and Advancing Research
The Global Prader Willi Syndrome (PWS) Registry is a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community, and is also used by researchers and scientists. By participating, families of those with PWS become part of the research team, helping uncover trends in causes and diagnosis as well as new directions in therapies and treatment.
By providing a means to collect and document the experiences, medications, symptoms, milestones, and other aspects of PWS from thousands of registry participants, the Global PWS Registry empowers PWS stakeholders to:
- Fully understand the full range of PWS characteristics
- Identify trends that generate new insights into PWS and areas for additional study
- Facilitate partnerships with university researchers and pharmaceutical companies
- Develop standards of care
- Expedite PWS clinical trials by helping connect registry participants with clinical trials and research studies
- Store their PWS medical data in one place
- Accelerate solutions for PWS
The Global Registry is run and maintained by our sister organisation FPWR in the USA.