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We are presently working on programs in the areas of awareness, creating a patient registry, a SYNGAP Educational Conference for doctors and researchers, and a scholarship fund for medical students who research SYNGAP.

SYNGAP International Patient Registry:

The SYNGAP International Patient Registry will organize a system of information that will use observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for SYNGAP mutations, condition or exposure, and that serves one or more predetermined scientific, clinical, or policy purpose.  In addition to providing clinically relevant data that are meaningful to patients and providers, this registry will have the ability to provide data on SYNGAP mutations not typically studied. The SYNGAP registry can offer adaptable designs and data collection strategies, making them particularly useful when treatments are rapidly changing. The registry will reveal potential bio-markers and crucial data for scientists that will speed up the development of drugs and new treatments for individuals with SYNGAP mutations.  The non-experimental design of this registry can be used to examine the impact of physician practice behaviors on quality of care, prescribing preference, and other important but difficult to quantify covariances.  This data will be accessible to researchers and doctor’s worldwide with the opportunity to coordinate efforts to produce new research and efforts to develop new hypothesis’ to study.

SYNGAP International Conference

For more information on The Importance of Patient Registry, check out our brochure

Partnering with Rare Disease Report to Raise Awareness for SYNGAP.  Check out their website for more up to date news on Rare Disease Here.

The SYNGAP Education and Research Conference will bring together stakeholders that include families, researchers, and medical doctors. One of the primary goals is to maximize scientific resources and coordinate efforts to reach communities of SYNGAP patients and find ways to reach the undiagnosed, including the Autism and Epilepsy communities.   The symposium will feature a broad range of topics related to SYNGAP mutations focusing on collected research, including published and unpublished data. Experts will lead discussions on current and future avenues of research.  Topics will include natural history studies, clinical trial design and therapeutic targets for identification in model systems.  Participants will gain valuable knowledge and collaborate together efforts to find faster pathways to therapies from theory to practice.  The program will feature both traditional lectures and interactive audience discussion guided by experienced facilitators to encourage participants to consider how they might approach these challenges and next steps for future progress

©2016 Bridge the Gap – SYNGAP ERF
All Rights Reserved.
15319 Redbud Berry Way 
Cypress, Texas 77433
Tel: (832) 671-0010
admin@bridgesyngap.org

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Tax ID:  47-2459997
Verified US Non-Profit 501c3

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