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Swiss launch major registry to track rare muscle diseases

NCT ID NCT05102916

Knowledge-focused Sponsor: University of Bern 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is a registry that collects health information from people in Switzerland who have neuromuscular disorders like SMA, DMD, BMD, and others. It aims to track symptoms, treatments, and outcomes over time to help researchers and doctors improve care. No new treatments are being tested; instead, the registry gathers real-world data to support future research and therapy access.

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 2,000 people

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

Started

Jun 2018

Expected to finish

Jan 2071

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 individuals living or treated in Switzerland with a diagnosis of a NMD. Currently, Spinal muscular atrophy, Duchenne muscular dystrophy, Merosin negative congenital muscular dystrophy MDC1A and Collagen 6 related muscular dystrophy are included. In the future, patients with other NMDs (e.g. Charcot-Marie-Tooth neuropathy, Myotonic Dystrophy or rare myopathies) may also be included if it appears relevant to clinicians and researchers active in the field of NMDs, patient organisations, and public health representatives.

Ages

0 years and older

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: * Children, adolescents and adults diagnosed with a NMD * Who are living or treated for a NMD in Switzerland, and * Who gave informed consent Exclusion Criteria: * None if diagnosis is confirmed, whenever possible, by genetic testing, or at least by biopsy and/or electroneuromyography, according to international standards for the diagnosis of the given NMD.

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Conditions

The condition(s) this trial relates to.

Becker muscular dystrophy collagen 6-related myopathy congenital merosin-deficient muscular dystrophy 1A congenital muscular dystrophy Duchenne muscular dystrophy proximal spinal muscular atrophy spinal muscular atrophy vitelliform macular dystrophy 2

As listed by the trial registrant

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

BMD Congenital muscular dystrophy DMD IMD SMA

How to take part

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

  1. The places running it

    19 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

  • Cantonal Hospital Aarau

    RECRUITING

    Aarau, Canton of Aargau, Switzerland

  • Cantonal Hospital of Eastern Switzerland

    RECRUITING

    Sankt Gallen, Switzerland

  • Cantonal Hospital of Lucerne LUKS

    RECRUITING

    Lucerne, Switzerland

  • Cantonal Hospital of Lucerne, LUKS

    RECRUITING

    Lucerne, Switzerland

  • Children's Hospital of Eastern Switzerland

    RECRUITING

    Sankt Gallen, Switzerland

  • Inselspital Bern

    RECRUITING

    Bern, Switzerland

  • Inselspital Bern, Children's Hospital

    RECRUITING

    Bern, Switzerland

  • Institute of Social and Preventive Medicine (ISPM), University of Bern

    RECRUITING

    Bern, Switzerland

  • Neuro Centre of Italian Switzerland, Ospedale Regionale di Lugano

    RECRUITING

    Lugano, Canton Ticino, Switzerland

  • Pediatric Institute of Southern Switzerland, Ospedale San Giovanni

    RECRUITING

    Bellinzona, Canton Ticino, Switzerland

  • Private Practice Alpenquai

    RECRUITING

    Lucerne, Switzerland

  • University Children's Hospital Basel

    RECRUITING

    Basel, Switzerland

  • University Hospital Basel

    RECRUITING

    Basel, Switzerland

  • University Hospital Lausanne CHUV

    RECRUITING

    Lausanne, Vaude, Switzerland

  • University Hospital Lausanne CHUV, Children's Hospital

    RECRUITING

    Lausanne, Vaude, Switzerland

  • University Hospital Zuerich

    RECRUITING

    Zurich, Switzerland

  • University Hospital Zuerich, Children's Hospital

    RECRUITING

    Zurich, Switzerland

  • University Hospitals of Geneva

    RECRUITING

    Geneva, Switzerland

  • University Hospitals of Geneva, Children's Hospital

    RECRUITING

    Geneva, Switzerland

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