December 2, 2021
Dear SYNGAP1 (MRD5) Natural History Study Registry Participants,
We thank you for your ongoing participation in the SYNGAP1 (MRD5) Natural History Study Registry as we strive to make a lasting impact on the understanding of, and development of treatments for SYNGAP1 (MRD5).
Our team would like to notify you of recent changes with our Institutional Review Board (IRB). An IRB is an independent group that oversees the protections of individuals who participate in research to ensure both physical and data safety. The Bridge the Gap – SYNGAP Education and Research Foundation; DBA SYNGAP1 Foundation has decided to transition from using wcg IRB to North Star Review Board.
For questions about those protections and 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, please contact North Star Review Board at 877-673-8439 (toll-free) or email@example.com.
Please feel free to reach out with any study-related questions or to discuss any concerns.
SYNGAP1 (MRD5) Natural History Study Registry Team
Phone: (+1) 240-347-0302