The Registry

You can increase understanding of myotonic dystrophy (DM) and improve the lives of those living with DM by joining the Myotonic Dystrophy Family Registry (MDFR). Click here to visit the Registry website.

The Myotonic Dystrophy Family Registry, which launched on Rare Disease Day,  February 28th, 2013, is unique in that it not only helps researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but also allows anyone who is registered to have access to the anonymous data, including individuals and families living with DM.  The Registry gives all DM stakeholders, from researchers and pharmaceutical partners to family members, a better understanding of the disease, the DM community, and current research and advocacy efforts.

Your Participation Helps Researchers

By joining the Myotonic Dystrophy Family Registry, you will aid researchers, pharmaceutical companies and other professionals seeking to:

  • Identify participants for clinical trials and research studies
  • Develop new, effective treatments for those living with DM
  • Advocate on behalf of the DM community with decision makers in Washington, D.C. and elsewhere

You Learn More about DM and the DM Community

Because you will have access to de-identified information in the Registry, you can learn more about DM, how it's experienced by other community members, and what the broader community looks like. This includes:

  • Information regarding clinical trials and studies for which you or members of your family may be eligible
  • Where Registry participants are located
  • What symptoms are most and least prevalent
  • How other community members manage living with DM
  • How DM has impacted other families living with this disease

It's Anonymous

Your participation is voluntary and your individual information will be kept completely confidential.  You can opt out of the Registry at any time and all of the data you provide will be entirely de-identified (anonymous).  This means that if you're potentially eligible for a clinical trial or research study based on your Registry data, researchers will contact us first.  We will follow up with you and, if you would like to learn more, will connect you with the interested research organization.  You will never be contacted by anyone but Registry staff.

Share the News

 

The more participants and data we have in the Registry, the more significant its impact, and size is critically important to helping support clinical trial and research study recruitment.  Please share our news with others in the DM community and help us continue to build a large, rich database that will help accelerate efforts to treat and cure this disease.

 

Get Started

Click here to visit Myotonic Dystrophy Family Registry website, learn more and sign up.