The Spanish National Registry for Myotonic Dystrophy Type 1

Recruiting now

Conditions studied: Myotonic Dystrophy 1, DM1, Myotonic Dystrophy Type 1, Myotonic Dystrophy, Congenital, Steinert Disease

In brief

Myotonic Dystrophy Type 1 (DM1) is a rare genetic neuromuscular condition that can affect multiple organs and varies widely in how it presents. DM1 is the most common form of adult-onset muscular dystrophy, with an estimated prevalence of approximately 1-5 per 10,000 people. In Spain, the condition shows notable regional differences, making it especially important to understand its characteristics within the population. The aim of this study is to support a research initiative designed to better characterise DM1. We are developing a comprehensive national registry, collecting patient-reported information, clinical data and omics data that will improve our understanding of the disease and help identify individuals who may be eligible for clinical trials.

Key facts

Study ID

NCT07385443

Run by

Fundació Institut Germans Trias i Pujol

People needed

3000

Starts

2025-06-02

Expected to finish

2026-12-31

Last updated by the study team

2026-02-04

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through genetic testing.

You may not qualify if…

• There are no exclusion criteria for the registry

Where it is running

• Hospitals within the DM1 network — Multiple Locations, Andalusia, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Basque Country, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Canary Islands, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Cantabria, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Castilla-La Macha, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Catalonia, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Madrid, Spain (enrolling)
• Hospitals within the DM1 network — Multiple Locations, Valencia, Spain (enrolling)

Full record on ClinicalTrials.gov

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