About SYNGAP1 (MRD5) Patient Registry
- About SYNGAP1 (MRD5) Patient Registry
What is a Patient Registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The SYNGAP1 (MRD5) Patient Registry serves to:
- Provide a convenient online platform for patients or their legally authorized
representative to report cases of SYNGAP1.
- Conduct a prospectively-planned natural history study that will result in the most
comprehensive understanding of SYNGAP1 and their progression over time.
- Characterize and describe the SYNGAP1 population as a whole.
- Assist the SYNGAP1 community with the development of recommendations for
standards of care.
- Assist researchers studying the pathophysiology of SYNGAP1.
- Support the design of clinical trials that explore new SYNGAP1 treatments.
What types of data will be collected in the SYNGAP1 (MRD5) Patients Registry? Is the
The SYNGAP1 (MRD5) Registry collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The SYNGAP1 (MRD5) Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks.
Communication between the registry platform application server and the database are also encrypted.