A Cure In Sight


An Institutional Review Board, for the purpose of protecting your 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 New England Independent Review Board (NEIRB) at 197 1st Avenue, Suite 250, Needham, MA 02494 at (800) 232-9570 (toll free) or . Review and approval of this Registry by NEIRB is not an endorsement of this Registry or its outcome.
You have questions, concerns, or complaints that are not being answered by the research team.
You are not getting answers from the research team.
You cannot reach the research team.
You want to talk to someone else about the research.
You have questions about your rights as a research subject.

Do not sign this form unless you have had a chance to ask questions and have received satisfactory answers to all of your questions

Visit the National Organization for Rare Disorders home page at