The Spanish National Registry for Myotonic Dystrophy Type 1
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 region
| Condition(s) | Myotonic Dystrophy 1, DM1, Myotonic Dystrophy Type 1, Myotonic Dystrophy, Congenital, Steinert Disease |
|---|---|
| Status | Recruiting |
| Study type | Observational |
| 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. |
| Who can participate | Inclusion Criteria: * Confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through genetic testing. Exclusion Criteria: * There are no exclusion criteria for the registry |
| Sex | All |
| Accepts healthy volunteers | Yes |
| Lead sponsor | Fundació Institut Germans Trias i Pujol |
| Locations | Multiple Locations, Andalusia, Spain; Multiple Locations, Basque Country, Spain; Multiple Locations, Canary Islands, Spain; Multiple Locations, Cantabria, Spain; Multiple Locations, Castilla-La Macha, Spain; Multiple Locations, Catalonia, Spain (+2 more sites) |
| Start date | 2025-06-02 |
| NCT ID | NCT07385443 |
| Official listing | https://clinicaltrials.gov/study/NCT07385443 |