Myotonic Dystrophy Family Registry

Launched by MYOTONIC DYSTROPHY FOUNDATION · Mar 24, 2015

Keywords

ClinConnect Summary

The Myotonic Dystrophy Family Registry (MDFR) is an online program designed to gather information about myotonic dystrophy, a genetic condition that affects muscle function. By collecting data from people diagnosed with different forms of myotonic dystrophy, this registry aims to help researchers find better treatments and identify individuals who might want to participate in research studies or clinical trials. This program is currently recruiting participants of all ages who have been diagnosed with congenital, juvenile-onset, or adult-onset forms of myotonic dystrophy (DM1 or DM2).

To join the registry, you need to have a confirmed diagnosis of myotonic dystrophy, either through a medical exam or genetic testing. Unfortunately, if you do not have this condition or if you are an unaffected family member, you won’t be eligible to participate. By joining, you’ll be contributing valuable information that can help advance research in this area, and you can expect to share your experiences and health information through an easy-to-use online platform. Your participation could make a meaningful difference in the lives of others affected by this condition.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test)
• Exclusion Criteria:
• • Not diagnosed with DM, unaffected family members