Accessing Patients through FSH Society and U.S. NIH Registries

FSH Society Patient Registry

The FSH Society FSHD Patient Registry is here to assist researchers, clinicians and allied health care professionals looking for volunteers willing to participate in their studies. Please contact us!

U.S. NIH FSHD Registry

The U.S. National Institutes of Health (NIH) has established a National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD) patients and family members.

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 NIH 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 NIH National Registry, please contact:   

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

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