The Global PWS Registry is managed by the Foundation for Prader-Willi Research (FPWR) www.fpwr.org with the mission to support and accelerate PWS research.
The purpose of the Global PWS Registry is to enhance the understanding of PWS by describing the full spectrum of PWS characteristics. The Registry is a comprehensive and secure database, compliant with health information privacy laws.
If you have PWS, or if you are the parent or legal guardian of a person with PWS, we invite you to participate in the global PWS registry.
You will be asked to provide details on topics such as developmental milestones, scoliosis, medications, appetite, behaviour and other clinical symptoms.
Go to
www.pwsregistry.org
to get started!