FSHD Contact Registry

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You could be the key to the next FSHD breakthrough.

With an estimated 1 million patients around the world with FSHD, researchers need a unified source that connects them to people affected by FSHD.  This will help them get the information they need faster.

To respond to this need, the FSHD Society brings you P.A.C.T. - Patients Accelerating Clinical Trials.  PACT is your onramp to participating in all types of research.  Whether it’s completing surveys, joining a clinical trial, or joining the upcoming PACT FSHD registry – an online platform where you will be able to contribute your information and access all types of research, including clinical trials.

Join our PACT

More than anything, researchers need data from actual FSHD patients - lots of data - to identify patterns and find answers.

  • How does FSHD affect different people?
  • What is the True Cost of living with FSHD?
  • Can we better predict progression of symptoms and their impact on quality of life?
  • Can we develop the right treatment for a person with FSHD? One that will positively impact their day-to-day life?

When you join the community, you can help us change what we know about FSH muscular dystrophy. And that can bring us closer to our first-ever treatment to slow the progression and closer to a cure.

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

You can make an impact! 

As an FSHD patient or caregiver, you are the key to unlocking success in clinical research for FSHD.  Your willingness to participate in research is necessary to informing the research and developing therapies and a cure.  Research opportunities include not only clinical trials, but surveys and other types of research.  To keep you alerted to research opportunities, the FSHD Society has created a ‘contact registry’ that you can join – just click the "Sign Up Today" button, fill out the form – and that’s it!

 

The need is urgent. 

There are multiple FSHD clinical trials and many more research programs in the future.  By maintaining a registry of patients and caregivers, the Society can inform you of upcoming trials, quickly so you can explore participating in any research programs you may quality for.  Delays in engaging patients in clinical research programs will delay promising therapies from reaching the FSHD community and our registry is designed to prevent this from happening.

Do you have family members with FSHD?

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

A deeper dive...

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!

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: