The Myotonic Dystrophy Family Registry

Myotonic Dystrophy Family Registry Logo




Coming Soon!

Help the research community better understand myotonic dystrophy and improve the lives of the people and families living with DM by joining the Myotonic Dystrophy Family Registry (MDFR), which will launch in February 2013. When you join and create a profile, you'll aid researchers seeking to develop new, effective treatments for myotonic dystrophy and identify participants for research studies and clinical trials.  You'll also help researchers, regulators and others involved in the drug development process understand how this disease affects the quality of life of people and families living with DM, provide MDF with information we can use to advocate on behalf of the community with decision makers in Washington, D.C. and elsewhere, and give researchers and other medical professionals information that can help them improve how they treat those affected with myotonic dystrophy.

It's Anonymous
Your participation is voluntary and your individual information will be kept completely confidential.  This will be your registry and you'll be in charge of the information in it.  You can opt out of the registry at any time.  All of the data you provide will be entirely de-identified (anonymous); researchers and other registry participants will only see your data and responses without any identifying information.  That means if your profile information is considered potentially eligible for a clinical trial, researchers will contact us first.  If you have been selected to share your information, we will then contact you to see if you are interested.  You will never be contacted by anyone but MDFR staff.  
You can also explore the data in the registry to learn about DM, how it is experienced by other DM community members and what the broader community looks like: where they are located, what symptoms are most and least prevalent, how other community members manage living with DM and other information. Plus, the registry is a great way to stay informed of upcoming clinical trials, research studies and other important DM research news.  By registering a profile you will have access to information regarding clinical trials and studies for which you or members of your family may be eligible.
Get Ready Now
While we get ready for the MDFR launch and before we send you a link to join the new registry, start gathering any available medical records and make sure your family members and DM community friends know about it.  With your help, we know MDFR will be a success.  
In the meantime, if you haven’t already done so, you should also join the National DM & FSHD Registry housed at the University of Rochester. While your information in MDFR is focused on creating demographic, quality of life and other information that you, researchers, pharmaceutical companies and others involved in research studies and drug development can use, the National DM & FSHD Registry will continue to develop critically important natural history, disease progression and other myotonic dystrophy data to promote long term understanding and discovery. Click here to register.