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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 NorthStar Review Board, Patricia Seymour, MA CIP at https://learningirb.org/..

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