Actively Recruiting
The Spanish National Registry for Myotonic Dystrophy Type 1
Led by Fundació Institut Germans Trias i Pujol · Updated on 2026-02-04
3000
Participants Needed
8
Research Sites
82 weeks
Total Duration
On this page
Sponsors
F
Fundació Institut Germans Trias i Pujol
Lead Sponsor
I
Instituto de Investigacion Sanitaria INCLIVA
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
The Spanish National Registry for Myotonic Dystrophy Type 1
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through genetic testing.
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 8 locations
1
Hospitals within the DM1 network
Multiple Locations, Andalusia, Spain
Actively Recruiting
2
Hospitals within the DM1 network
Multiple Locations, Basque Country, Spain
Actively Recruiting
3
Hospitals within the DM1 network
Multiple Locations, Canary Islands, Spain
Actively Recruiting
4
Hospitals within the DM1 network
Multiple Locations, Cantabria, Spain
Actively Recruiting
5
Hospitals within the DM1 network
Multiple Locations, Castilla-La Macha, Spain
Actively Recruiting
6
Hospitals within the DM1 network
Multiple Locations, Catalonia, Spain
Actively Recruiting
7
Hospitals within the DM1 network
Multiple Locations, Madrid, Spain
Actively Recruiting
8
Hospitals within the DM1 network
Multiple Locations, Valencia, Spain
Actively Recruiting
Research Team
G
Gisela Nogales Gadea, Ph.D.
CONTACT
A
Alvaro S Larran Mottino, Ph.D.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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