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:
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.
ACTION = IMPACT!
BTG SYNGAP1 Research Team