Swiss launch major registry to track rare muscle diseases

NCT ID NCT05102916

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Cantonal Hospital Aarau

    RECRUITING

    Aarau, Canton of Aargau, Switzerland

    Contact

  • Cantonal Hospital of Eastern Switzerland

    RECRUITING

    Sankt Gallen, Switzerland

    Contact

  • Cantonal Hospital of Lucerne LUKS

    RECRUITING

    Lucerne, Switzerland

    Contact

  • Cantonal Hospital of Lucerne, LUKS

    RECRUITING

    Lucerne, Switzerland

    Contact

  • Children's Hospital of Eastern Switzerland

    RECRUITING

    Sankt Gallen, Switzerland

    Contact

  • Inselspital Bern

    RECRUITING

    Bern, Switzerland

    Contact

  • Inselspital Bern, Children's Hospital

    RECRUITING

    Bern, Switzerland

    Contact

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

    RECRUITING

    Bern, Switzerland

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Neuro Centre of Italian Switzerland, Ospedale Regionale di Lugano

    RECRUITING

    Lugano, Canton Ticino, Switzerland

    Contact

  • Pediatric Institute of Southern Switzerland, Ospedale San Giovanni

    RECRUITING

    Bellinzona, Canton Ticino, Switzerland

    Contact

  • Private Practice Alpenquai

    RECRUITING

    Lucerne, Switzerland

    Contact

  • University Children's Hospital Basel

    RECRUITING

    Basel, Switzerland

    Contact

  • University Hospital Basel

    RECRUITING

    Basel, Switzerland

    Contact

  • University Hospital Lausanne CHUV

    RECRUITING

    Lausanne, Vaude, Switzerland

    Contact

  • University Hospital Lausanne CHUV, Children's Hospital

    RECRUITING

    Lausanne, Vaude, Switzerland

    Contact

  • University Hospital Zuerich

    RECRUITING

    Zurich, Switzerland

    Contact

  • University Hospital Zuerich, Children's Hospital

    RECRUITING

    Zurich, Switzerland

    Contact

  • University Hospitals of Geneva

    RECRUITING

    Geneva, Switzerland

    Contact

  • University Hospitals of Geneva, Children's Hospital

    RECRUITING

    Geneva, Switzerland

    Contact