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:  

What types of data will be collected in the SYNGAP1 (MRD5) Patients Registry? Is the
data secure?

The SYNGAP1 (MRD5) Registry collects data on the following topics:  

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.