Contact Person: Jennifer DiRaimo, Research Coordinator


Phone: 440-746-9003

Social Media: @pdsa_itp


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: 
Toll free telephone #: 877-673-8439



Visit the National Organization for Rare Disorders home page at