FSHD Contact Registry

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Your data will power breakthroughs for FSHD!

When FSH Muscular Dystrophy impacts a family, they have one goal: to live their best life, which includes finding treatments and a cure. There are no approved drugs to treat FSHD, but at the FSHD Society, we are working hard to advance research and speed drug development.

There is so much to learn and getting those answers depends on you. With multiple clinical trials enrolling and more on the way, the need for more patients to participate in research is crucial.

Your information

  • helps researchers understand how FSHD progresses;
  • increases understanding of the costs of living with FSHD;
  • advances collective understanding of the diversity in the FSHD community;
  • improves care at the doctor’s office; and
  • ensures greater success in clinical trials.

The FSHD Society serves as your onramp to participating in all types of activities that further our understanding of FSHD. Sign up to receive targeted information that will enrich your personal journey and connect you to all types of research, including clinical trials.

Your participation will help power breakthroughs. It is the single most important commitment you can make to accelerate research and find treatments and a cure! Will you join us in building a better life?

SIgn Up Today!

The FSHD Society will not share the information you provide with any third parties. Your participation is critical to finding treatments and a cure for FSHD!

FSHD Patients and Caregivers are the Key to Success in FSHD Research

Even if you have been a member of the Society for many years...

...or personally know our staff, the fact that you are a patient may not be recorded in our database. We have also added additional questions that help us target research opportunities to qualified patients. Please complete the form to ensure we have the most up to date information!

A deeper dive...

Do you have family members with FSHD?

Let them know how important it is for each individual to join the FSHD Society and participate in the research. Call, email, or text them an invitation to join the registry and send them to FSHDSociety.org/FSHDRegistry

Other registries related to FSHD

National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy, University of Rochester

Established with funding from the U.S. National Institutes of Health (NIH), this registry is a natural history research study. Registry members complete questionnaires every year about their symptoms. This data can lead to a better understanding of FSHD, how symptoms change over time, and how to improve care for patients. The data are made available to be analyzed by qualified researchers.

If you would like to participate or have questions, please contact:

  • Leann Lewis, MS Health Project Coordinator at the University of Rochester Medical Center/Fields Center/Neuromuscular Disease Center Phone: 585-275-7680
    Email: leann_lewis@urmc.rochester.edu
  • The 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;
  • Email: dystrophy_registry@urmc.rochester.edu; Web: http://www.dystrophyregistry.org

 

TREAT-NMD maintains a list of international research registries. http://www.treat-nmd.eu/resources/patient-registries/list/fshd/

In addition, many research centers maintain a volunteer registry of patients who are willing to be contacted for research studies: