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Spanish researchers launch massive DM1 registry to unlock disease secrets

NCT ID NCT07385443

Knowledge-focused Sponsor: Fundació Institut Germans Trias i Pujol Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study aims to create a national registry for people with Myotonic Dystrophy Type 1 (DM1) in Spain. Researchers will collect clinical data, genetic information, and patient reports from up to 3,000 participants. The goal is to better understand the disease and identify people who may be eligible for future clinical trials.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could help researchers better understand DM1 and speed up recruitment for future clinical trials.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly improve symptoms or provide a cure.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 3,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2025

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants with Myotonic Dystrophy Type 1 (DM1) will volunteer to participate in this study. The study will be advertised through physician recommendations, outreach and educational activities directed at neuromuscular professionals, the registry website, national and local patient associations, and through patient-focused events, conferences, and scientific meetings across Spain.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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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Conditions

The condition(s) this trial relates to.

congenital myotonic dystrophy myotonic dystrophy myotonic dystrophy type 1

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

DM1 Myotonic dystrophy 1 Myotonic dystrophy type-1 Myotonic dystrophy, congenital Steinert disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    8 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Andalusia, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Basque Country, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Canary Islands, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Cantabria, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Castilla-La Macha, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Catalonia, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Madrid, Spain

  • Hospitals within the DM1 network

    RECRUITING

    Multiple Locations, Valencia, Spain

More trials for these conditions

Other studies related to the condition(s) this trial covers.