Change in IRB Notice

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

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

New Sleep and Circadian Rhythm Surveys

April 24, 2020,

Dear SYNGAP1 Registry Participants and Community Members,

Thank you for your continued interest in the SYNGAP1 (MRD5) Patient Registry and Natural History Study! Historical health information from the registry provides clinicians and researchers with a strong base of needed patient information and data.

We are excited to announce a new SYNGAP1 Biomedical Research Project in partnership with Ohio State University. This study will focus on a better understanding of MRD5 patient sleep disturbances.

Surveys have been developed to facilitate the collection of MRD5 patient sleep disturbance data for this research project. The surveys are now available to register SYNGAP1 patients/families on the SYNGAP1 (MRD5) Patient Registry and Natural History Study. The data collected from these surveys will also help enhance data from on-going animal studies (in WT and Syngap1 heterozygous mice).

We have provided a link below for easy to access to the SYNGAP1 (MRD5) Patient Registry and Natural History Study website:

Registry Link: ( )

Survey Titles: Sleep Survey, Circadian Rhythm/Chronotype Survey

Please reach out to us with any questions you may have regarding this survey.

We appreciate your continued support and participation in SYNGAP1 Research! Each survey completed provides data needed to help accelerate pathways to better treatments for those affected by SYNGAP1.


Thank you!

Warmest Regards,

BTG SYNGAP1 Research Team