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).
The Myotonic Dystrophy Family Registry 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.
You Participation Helps Researchers
By joining the Myotonic Dystrophy Family Registry, you will aid researchers, pharmaceutical companies and other professionals seeking to:
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:
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.