The Global PWS Registry is powered by the dedication of patients and families who share their PWS experiences. Each piece of data collected helps unlock insights that fuel scientific discoveries and treatment breakthroughs.
Registry data has already powered several important initiatives, like the PATH for PWS study, which identified significant medical events in people with PWS and supported the FDA approval of the first treatment for hyperphagia. Now, with the launch of Registry 2.0 and the new Vykat module, we are taking the next bold step towards new treatments and better care for everyone in the PWS community.
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What’s New in Version 2.0: Enhanced Features and Usability
The newly launched Global PWS Registry version 2.0 brings a host of improvements designed to enhance user experience and accessibility. You will be excited to find that the Registry 2.0 offers an improved user design and a more mobile-friendly experience. Additionally, a dedicated mobile app will soon be available to download, making survey completion a breeze when you are on the go!
"The Registry has given us critical insights, strides in advancing our understanding of how to best care for individuals with PWS," says Theresa Strong, Director of Research Programs at FPWR. "With the launch of version 2.0, its impact is set to grow even further. With this update and the new VYKAT module, the Registry will expand our capability, allow us to reach a broader PWS population, and, for the first time, gather data about the real-world use of VYKAT.”
Introducing the New VYKAT Module: Collecting Real-World Data on a New Treatment for PWS
One of the most exciting additions to the Global PWS Registry 2.0 is the new VYKAT module. This module is designed to collect real-world data from parents and caregivers of individuals with PWS who are taking, or have previously taken, VYKAT XR (also known as DCCR or diazoxide-extended release). By gathering detailed information on the use of VYKAT, including who benefits from the therapy, the side effects experienced, and the reasons for discontinuation, the registry aims to enhance our understanding of the drug's effectiveness and safety in real-time. The VYKAT module consists of a series of surveys that capture a wide range of data, and will provide our families and healthcare providers with a comprehensive view of the real-world use of VYKAT. This information is critical for optimizing treatment protocols and improving patient outcomes.
Turning Individual Stories into Community Insights
Once you complete a Registry survey, you don’t just send your answers into a void—you can actually see the results from the community. With Registry 2.0, you can instantly visualize the data and learn from the collective experiences of other families. By contributing your own information, you’re not only helping researchers and clinicians, you’re also gaining valuable insights that can guide your own journey. It’s the power of shared knowledge, turning individual stories into community-wide understanding.
How Your Participation Fuels Progress in PWS Research and Care
When you enter your information into the registry, you’re not just filling out surveys — you’re fueling a journey that has the power to change lives. It starts with you. Your story, your experiences, and your survey responses become part of a growing collection of real-world data.
Researchers turn to the registry to understand what families are facing, what challenges matter most, and where urgent needs remain. That knowledge sparks new questions and guides the direction of studies, focusing attention on the issues that are most important for daily life. From there, companies and pharmaceutical partners use this very same information to design therapies and treatments, knowing they are addressing what the community truly needs. And when clinical trials launch, the registry becomes a bridge — helping connect families with opportunities to participate in research that may lead to the first effective treatments.
All of that begins with one person deciding to share their information. Your voice in the registry shapes the future of care, directs the path of science, and brings us closer to real therapies. Your impact is bigger than you can imagine.
Visit the Registry today at www.pwsregistry.org to create or update your account, complete surveys, and see results from the PWS community.
