The PWS Registry
The PWS Registry will be available in spring 2013. Please visit this page again soon for updates!
As recommended by top scientists in the world, FPWR will be launching the PWS Registry in 2013. The PWS Registry is a collection of the medical history of people with PWS that is designed to advance PWS research and accelerate the development of PWS treatments. Currently, it is difficult for researchers to collaborate, identify patterns across large numbers of people with PWS, and find enough people with PWS to participate in upcoming clinical trials. The PWS Registry will help eliminate these bottlenecks and will increase the interest of pharmaceutical companies in PWS.
As PWS basic research has advanced, we are now at a point where clinical trials for potential treatments are becoming available. Creating a PWS Registry is a critical step bridging the gap between theory and practice. To ensure our PWS registry is world-class, FPWR is partnering with a world-leading supplier of registries, as well as with the National Institute of Health (NIH) to create a secure, anonymized, and private PWS Registry. Simply by enrolling in the PWS Registry, you will help advance research and expedite therapeutic developments.
Details of how to participate in the Registry will be available soon.