Connecting to FSHD Research and Clinical Trials through Registries

A disease registry or patient registry is a database of information on patients with a particular disease, such as facioscapulohumeral muscular dystrophy (FSHD), that can accessed and used by researchers, clinicians, and physicians interested in working on the disease. Registries are especially valuable in diseases like FSHD where access to patients and materials is limited. The collected information contained within the registry is used to increase the understanding of FSHD by allowing doctors, clinicians and researchers to access patients and biomaterials.  Many more research projects and avenues of investigation will result from FSHD patients and their families signing up and becoming involved!

There are several disease research or patient registries available for FSHD in the United States:

The FSH Society maintains a FSHD registry of patients and families wishing to become involved in research. 

The U.S. National Institutes of Health (NIH) funds the National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members.  The National Registry helps individuals and families with FSHD participate in research on their disease.  It helps investigators accomplish their research by connecting them with people who have FSHD and it acts as a resource to facilitate more research on FSHD.