About DTRF Desmoid Tumor 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 DTRF Patient Registry serves to:

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

The DTRF Patient Registry collects data on the following topics:

The DTRF Patient 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.