We're here to help

Institutional Review Board (IRB)

An Institutional Review Board, for the purpose of protecting 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 info@northstarreviewboard.org.

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