A standing army for FSHD
You can make a difference! When you first found our website, you may have signed up to get emails and you may, understandably, think that you are all set. But we still have two VITAL unanswered questions: Are you a person with FSHD? And where do you live? We must have this information because our clinical trial alerts go out only to patients who live near a study location. To make sure you'll be notified, please fill out the Research Contact Registry form below. Your data is safe with us. You will NOT be contacted directly by companies or automatically enrolled in a study.
The need is urgent. There could be four or five FSHD clinical trials in the coming year, yet there may not be enough known, email-contactable patients in our database to meet the enrollment goals for these trials. Any delay in enrolling patients slows down the entire clinical trial—and delays promising therapies from reaching our community.
The FSHD Society maintains the world’s largest contact registry of FSHD patients and families. We will contact members regarding any research studies and clinical trials in their area. We do not share your data with anyone else, so you don’t need to worry about loss of privacy or about getting contacted directly by companies.
A deeper dive...
Do you have family members with FSHD?
Let them know how important it is for each individual join the Research Contact Registry.
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!
You may also join other registries related to FSHD
We encourage all patients and families to sign up:
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy, University of Rochester is the principal FSHD research registry
- Established with funding from the U.S. National Institutes of Health (NIH), this registry is itself a research study. Registry members read and sign an informed consent form to join, and 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: