About Kabuki Syndrome 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 Kabuki Syndrome Registry serves to:

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

The Kabuki Syndrome Registry collects data on the following topics:

The Kabuki Syndrome 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.

Registration Procedure Guide 

Patient Registry FAQ