Welcome to the Global Prader-Willi Syndrome Registry.
The purpose of the registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, to expedite the completion of clinical trials, and to determine areas of needed research and treatments to improve the lives of those affected by PWS.
Third parties may seek access to data in the Global Prader-Willi Syndrome Registry. Third parties may include, but are not limited to, researchers or companies conducting retrospective studies or conducting research and/or clinical trials on new therapies. Third parties will only be granted access to registry information upon review and approval of the Advisory Board. Such approvals shall be obtained prior to providing access to registry information; shall be based upon considerations of scientific quality and validity; shall be granted for research studies related to PWS; and shall be documented. Third parties seeking access to registry information for retrospective studies will only have access to anonymous information identifiable only by the assigned unique identifier. Third parties seeking access to registry information for the purpose of determining eligibility for participation in a research study or clinical trial must demonstrate evidence of IRB approval of the research study for which access is being requested.
For additional information or inquiries, please contact us at: firstname.lastname@example.org.
For access to downloads of IRB approved Global PWS Registry Protocol and Informed Consent documents, click here.
To receive monthly reports of data coming out of the Registry, please send and e-mail to email@example.com
THE NIH/NCATS GRDR PROGRAM
Global Rare Diseases Patient Registry Data Repository
The Global PWS Registry is a member of the GRDR program https://ncats.nih.gov/grdr. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across all rare diseases and to develop novel diagnostics and therapeutics for patient beneift.