About Tatton Brown Rahman Syndrome Community 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 Tatton Brown Rahman Syndrome Registry (TBRS Registry) serves to:

 What types of data will be collected in the TBRS Registry?  Is the data secure?

The TBRS Registry collects data on the following topics:

The TBRS 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.