SYNGAP1 Patient Registry is a research project that aims to study the SYNGAP1 gene changes that are associated with intellectual disability, epilepsy, autism, and other overlapping symptomology and neurodevelopmental disorders.
Participants Can:
- Learn about their family member’s diagnosis
- Partner with some of the best minds in science
- Get updates on the latest research findings
- Connect with others who share their diagnosis
- Contribute to advancements that will change the future for families with SYNGAP1 gene changes.
- SYNGAP1 Patient Registry is a research project that aims to study the SYNGAP1 gene changes that are associated with intellectual disability, epilepsy, autism, and other overlapping symptomology and neurodevelopmental disorders.
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Academic Research Institution Data Request
The SYNGAP1 Patient Registry collects disease-specific natural history data about individuals with SYNGAP1-related Disorders to improve the understanding of SYNGAP1-related Disorders and inform treatment development. Registry questionnaires were built from common data element standards and cover the following topics, among others:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
If you want access to the SYNGAP1 Patient Registry data for a research project, please contact our registry administrator at syngap1.research@syngap1foundation.org.
Accessing the SYNGAP1-related Disorders data is contingent upon project approval by the SYNGAP1 Registry Advisory Committee (SRAC).
Pharmacutical and Biotech Data Request
More Information Coming Soon
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