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Recruiting NCT07385443

The Spanish National Registry for Myotonic Dystrophy Type 1

Trial Parameters

Condition Myotonic Dystrophy 1
Sponsor Fundació Institut Germans Trias i Pujol
Study Type OBSERVATIONAL
Phase N/A
Enrollment 3,000
Sex ALL
Min Age N/A
Max Age N/A
Start Date 2025-06-02
Completion 2026-12-31
Interventions
Patient Registry

Brief Summary

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.

Eligibility Criteria

Inclusion Criteria: * Confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through genetic testing. Exclusion Criteria: * There are no exclusion criteria for the registry

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