Patient Registries

FSH Society Patient Registry

The FSH Society FSHD Patient Registry is here to assist researchers, clinicians, and allied healthcare professionals looking for volunteers willing to participate in their studies.  Contact the FSH Society for further information.

U.S. NIH FSHD Registry at the University of Rochester

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. Housed at the University of Rochester, 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 14642-8673 USA

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