Spanish National Registry for Myotonic Dystrophy Type 1
Creación de un Nodo Integral Para la Distrofia Miotónica Tipo 1 en España: Registro clínico, Mapas genómicos, epigenómicos y proteómicos (DM1-Hub)
Fundació Institut Germans Trias i Pujol · NCT07385443
This registry gathers health, clinical, and genetic information from people in Spain with DM1 to see how the condition changes over time and help match patients to future trials.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3000 (estimated) |
| Sex | All |
| Sponsor | Fundació Institut Germans Trias i Pujol (other) |
| Locations | 8 sites (Multiple Locations, Andalusia and 7 other locations) |
| Trial ID | NCT07385443 on ClinicalTrials.gov |
What this trial studies
The DM1-Hub Patient Registry enrolls people living in Spain who have a genetic diagnosis of myotonic dystrophy type 1 and collects patient-reported outcomes, clinical data, and omics samples. Participants are referred by neurologists, patient organizations, or self-refer and complete informed consent during a clinic visit, after which data are entered into a REDCap database and local support staff coordinate follow-up. The registry will perform longitudinal follow-up and recruit a parallel control group to support biomarker discovery and characterization of disease progression. Centralized clinical and molecular data aim to capture regional differences and identify individuals eligible for future clinical trials.
Who should consider this trial
Good fit: Ideal candidates are people living in Spain with a genetically confirmed diagnosis of myotonic dystrophy type 1 who are willing to share clinical information and biological samples over time.
Not a fit: People without a confirmed genetic diagnosis of DM1, those unwilling to provide consent or samples, and individuals living outside Spain are unlikely to benefit directly from this registry.
Why it matters
Potential benefit: If successful, the registry could speed up biomarker discovery and trial recruitment, helping bring more effective treatments to people with DM1 in Spain.
How similar studies have performed: Other national and international DM1 registries and natural history cohorts have successfully supported biomarker discovery and clinical trial enrollment, so this approach builds on established methods.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through genetic testing. Exclusion Criteria: * There are no exclusion criteria for the registry
Where this trial is running
Multiple Locations, Andalusia and 7 other locations
- Hospitals within the DM1 network — Multiple Locations, Andalusia, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Basque Country, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Canary Islands, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Cantabria, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Castilla-La Macha, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Catalonia, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Madrid, Spain (RECRUITING)
- Hospitals within the DM1 network — Multiple Locations, Valencia, Spain (RECRUITING)
Study contacts
- Principal investigator: Arturo Lopez Castel, Ph.D. — INCLIVA Instituto de Investigación Sanitaria
- Study coordinator: Gisela Nogales Gadea, Ph.D.
- Email: gnogales@igtp.cat
- Phone: (+34) 93 554 3050
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Myotonic Dystrophy 1, DM1, Myotonic Dystrophy Type 1, Myotonic Dystrophy, Congenital, Steinert Disease