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New registry aims to improve care for muscular dystrophy patients

NCT ID NCT07402122

Knowledge-focused Sponsor: Dr. Andreas Ziegler Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a registry for people with Duchenne and Becker muscular dystrophy, as well as symptomatic female carriers. The goal is to collect health data and quality-of-life information to monitor how new therapies work in real-world settings. Up to 1,500 participants from German-speaking countries will be enrolled, with no age restrictions. The registry will help doctors and researchers improve care and develop better treatment guidelines.

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 provide real-world evidence on how new treatments work in everyday care, helping to improve guidelines and quality of life for patients.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test a new drug or therapy, and results depend on consistent data collection from many centers.

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 1,500 people

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

Expected to start

Apr 2026

An estimate. Start dates often move.

Expected to finish

Jun 2041

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

All patients meeting the eligibilty criteria in Germany and Austria.

Ages

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

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Genetically confirmed diagnosis of dystrophinopathy * Female carriers only if they show clinical symptoms of a dystrophinopathy * Treatment in one of the participating centers * No age restrictions * Ability to understand the patient information and sign the informed consent * Consent capability by the patient themselves and/or by the parents * Agreement to data exchange between the treating physicians, the telemedicine platform, and the registry * Possession of a tablet or a smartphone Exclusion Criteria: * Missing legally valid consent form from the patient and/or legal guardians * Project content is not understandable to the participant and/or legal guardians * Not in possession of a tablet or smartphone

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Conditions

The condition(s) this trial relates to.

Becker muscular dystrophy Duchenne muscular dystrophy muscular dystrophy neuromuscular disease symptomatic form of muscular dystrophy of Duchenne and Becker in female carriers

As listed by the trial registrant

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

Becker muscular dystrophy Duchenne muscular dystrophy (DMD) Dystrophinopathy symptomatic female carrier

How to take part

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

  1. The places running it

    2 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

  • Universitätsklinik Heidelberg, Zentrum für Kinder- und Jugendmedizin

    Heidelberg, Germany

  • Universitätsklinikum Essen Klinik für Kinderheilkunde I

    Essen, Germany

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