The Global Prader-Willi Syndrome Registry

Sponsor

Foundation for Prader-Willi Research
440 N Barranca Ave #3620
Covina, CA 91723
www.fpwr.org

Registry Contact

Jessica Bohonowych
info@pwsregistry.org
(888) 322-5487

Institutional Review Board (IRB)

North Star IRB
learningirb.org
info@northstarreview.org

An Institutional Review Board, for the purpose of protecting your/the Study Participant’s rights, has reviewed this registry. An Institutional Review Board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies. For questions about your rights as a Study Participant in this Registry or to discuss other study-related concerns or complaints with someone who is not part of this Registry team, you may contact North Star IRB at learningirb.org.

Visit the National Organization for Rare Disorders home page at rarediseases.org.