Spanish registry for myotonic dystrophy type 1

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 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 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 study follows people with myotonic dystrophy type 1 (DM1) over time to learn more about how the disease progresses. It collects health information and samples to help improve care.

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.

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.