RESEARCH NEWS
NEW REGISTRIES OF PEOPLE WITH MMD, FSHD, CMT WILL HELP ACCELERATE RESEARCH

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MDA-affiliated scientists are helping establish national registries of people affected by three of the most common inherited neuromuscular diseases: myotonic dystrophy (MMD), facioscapulohumeral muscular dystrophy (FSHD) and Charcot-Marie-Tooth disease (CMT).

By collecting medical information from people affected by those diseases nationwide and making that information available to scientists, the registries are expected to accelerate research seeking effective treatments.

Scientists have so far struggled to treat the three diseases because each one is associated with complex genetic mutations and symptoms that vary from person to person. The registries will enable researchers to match specific mutations with specific symptoms, and to recruit patients for large studies and clinical trials.

MMD and FSHD will fall under a single registry orchestrated by Richard Moxley III, co-director of the MDA clinic at the University of Rochester in Rochester, N.Y. The registry is expected to begin enrolling patients in the fall.

The CMT registry is a collaborative effort between scientists at Wayne State University in Detroit and Indiana University in Indianapolis, spearheaded by MDA grantee Michael Shy at Wayne State. It's expected to be up and running by February.

Participation in either registry is voluntary.

Click here to visit the MMD/FSH registry.

Further information about the CMT registry is available at www.med.wayne.edu/neurology/clin_programs/labs/CMT/index.htm .