Join a family registry for myotonic dystrophy (DM1 or DM2)
Part of Bones, joints & muscles, Brain & nervous system, Genetic & congenital clinical trials.
This study builds a registry of people and families affected by myotonic dystrophy types 1 and 2. It helps researchers learn about the condition over time and may support future studies that could lead to better care.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have been diagnosed with myotonic dystrophy type 1 (DM1), type 2 (DM2), or both
- Your diagnosis is confirmed by a clinician exam and/or genetic (DNA) testing
- You can participate if you have congenital, juvenile-onset, or adult-onset DM1/DM2
- If you do not have DM (you are unaffected), you cannot join the registry
- Family members who are not diagnosed with DM also cannot join
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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This registry collects information from people with myotonic dystrophy type 1 (DM1) to better understand the condition and improve care. Anyone with a confirmed genetic diagnosis can join.
This is a registry study that collects health information from people with myotonic dystrophy (a genetic muscle disease that causes weakness and stiffness) or facioscapulohumeral muscular dystrophy (a genetic condition affecting shoulder and face muscles), as well as their unaffected family members. The information helps researchers better understand these conditions and track how they progress over time.
This study follows people with myotonic dystrophy (DM1 or DM2) for 2 years to learn more about the disease. You must already be in the DM-Scope registry and have certain medical records available.
This study is a long-term follow-up for people with myotonic dystrophy type 1. It aims to find better ways to measure how the disease progresses, which could help develop future treatments.
This is a national registry that collects information from people who have (or may soon have) myotonic dystrophy. By joining, you help researchers better understand the disease and may make future studies easier to access.
This study measures physical and lab “health markers” in people with myotonic dystrophy type 1 (DM1) to better understand how the disease changes over time. Some participants may also have a muscle biopsy to study tissue differences.
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