The U.S. National Institutes of Health (NIH) Patient Registry

U.S. National Institutes of Health (NIH) National Registry of U.S. Myotonic Dystrophy and U.S. Facioscapulohumeral Muscular Dystrophy Patients and Family Members

The NIH has established a National Registry of Myotonic Dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) patients and family members. The registry is a database of U.S. patients diagnosed with DM or FSHD who are interested in participating in research about these diseases. Their unaffected family members are also invited to join.

The National Registry:

• Helps people who are affected by FSHD participate in research on FSHD
• Helps researchers and clinicians connect to those who are affected by FSHD

The National Registry assists researchers looking for volunteers to participate in their studies by searching the registry database for qualified members. The registry staff sends those members a letter announcing the project. Applications are accepted from members and researchers across the United States.

To enroll, people are required to complete a comprehensive questionnaire. If you would like to participate or have questions regarding the U.S. NIH National Registry, please contact:

The NIH National Registry of Myotonic Dystrophy and FSHD
601 Elmwood Avenue
Box 673
Rochester, NY 14642-8673 USA

Toll free: (888) 925-4302 (9 a.m. to 4 p.m. weekdays, EST)
Local (Rochester, NY): (585) 276-0004
Fax: (585) 273-1255
e-mail: dystrophy_registry@urmc.rochester.edu
Web: http://www.dystrophyregistry.org