Muscle Disease and Family Health Registry
Part of Bones, joints & muscles, Brain & nervous system, Genetic & congenital clinical trials.
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.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have been diagnosed with myotonic dystrophy, facioscapulohumeral muscular dystrophy (FSHD), or a related muscle disease
- OR you are a family member of someone diagnosed with one of these muscle diseases (even if you don't have symptoms)
- You are willing to share your health history and information with researchers
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
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.
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 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 registry aims to collect health information from people in the UK who have facioscapulohumeral muscular dystrophy (FSHD). It helps researchers better understand the disease and plan future studies.
This study collects blood and, for some people, muscle tissue to look for signs (biomarkers) that can help track and better understand myotonic dystrophy. You may help by providing samples and basic muscle function testing, depending on your age and condition type.
This study uses MRI scans to measure muscle changes in people with myotonic dystrophy (DM1 or DM2) and healthy volunteers. The goal is to find better ways to track the disease over time.
Hear when a new Myotonic Dystrophy trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.