Join the Registry

Join the Registry

Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM. Click on the image or "Join the Registry" above to get started.

Join the Registry

Join the Registry

Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM. Click  the image or "Join the Registry" above to get started.

Join the Registry

Join the Registry

Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM. Click  the image or "Join the Registry" above to get started.

Join the Registry

Join the Registry

Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM. Click  the image or "Join the Registry" above to get started.

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Registration for Professionals

Researchers, clinicians and other professionals can access de-identified aggregate data in this patient-driven registry to identify target populations for trial/study planning or recruitment. You can also contact MDFR to communicate with MDFR registrants on your behalf regarding potential candidacy for clinical trials and research studies.  Register as a Professional to get started.

Registry Updates

Stay informed about the latest registry-related news, including how updating your Registry survey responses can win you a free iPad. For more information, click on Registry Updates above or the icon on the left.

Resources

Find a host of resources to support you and your family members living with DM. Access information on how to better manage symptoms, connect with online support resources, and more.

Explore the Data

Remember, this is your registry and you’re in charge of the information in it. Check out how to explore the information you and others have provided to learn more about DM and its impact on other community members. Log into your account today and start exploring the data.