Spanish National Registry for Myotonic Dystrophy Type 1
Official title: Creación de un Nodo Integral Para la Distrofia Miotónica Tipo 1 en España: Registro clínico, Mapas genómicos, epigenómicos y proteómicos (DM1-Hub)
Run by Fundació Institut Germans Trias i Pujol · NCT07385443 · Data updated 2026-11-12
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 |
|---|---|
| Sex | All |
| Enrollment | 3000 (estimated) |
| Sponsor | Fundació Institut Germans Trias i Pujol Academic / other |
| Locations | 8 sites (Multiple Locations, Andalusia and 7 other locations) |
| Status | Recruiting |
| Started | June 2, 2025 |
| Main results expected | December 31, 2026 |
| Study ends | December 31, 2035 |
| Registry record updated | November 3, 2026 |
| Trial ID | NCT07385443 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a 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.
✕Probably 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.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: 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.
Who can join: the full rules
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 it's running
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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
Show 2 more locations
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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
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Understanding long-term progression in myotonic dystrophy type 1 (DM1)
This study will follow adults with DM1 for at least four years to see how walking, hand function, muscle strength, heart rhythms, and lung function change over time.
-
Online registry for myotonic dystrophy patients
This study is creating an online registry for people with myotonic dystrophy to share their experiences and help researchers find better treatments.
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Zeleciment Basivarsen (DYNE-101) for people with myotonic dystrophy type 1
This trial will test whether Zeleciment Basivarsen (DYNE-101) improves symptoms and is safe and tolerable for adults with myotonic dystrophy type 1.
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Identifying biomarkers and clinical endpoints in Myotonic Dystrophy Type 1
This study is trying to learn more about Myotonic Dystrophy Type 1 by looking at how the disease affects around 700 adults over two years, including their muscle health and daily activities.
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Metabolomic biomarkers for myotonic dystrophy
This study tests whether urine and blood tests, along with muscle function tests, can detect and measure myotonic dystrophy activity and severity without relying on muscle biopsies.
-
Remote Assessments and Genetic Factors in Congenital and Childhood DM1
This study tests how congenital, childhood, and juvenile DM1 affect kids by doing remote visits, activities, and a small blood sample to explore symptoms and genetics.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.