Contact Us
The Global Schaaf-Yang Syndrome Registry
Contact Us
Sponsor
Foundation for Prader-Willi Research
440 N Barranca Ave #3620
Covina, CA 91723
www.fpwr.org
Registry Contact
Jessica Bohonowych
info@sysregistry.org
888-322-5487
IRB
North Star Review Board
https://learningirb.org/
info@northstarreviewboard.org
Institutional Review Board (IRB)
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 Review Board at https://learningirb.org/.
Visit the National Organization for Rare Disorders home page at rarediseases.org.