RecruitingNCT05102916

Swiss Registry for Neuromuscular Disorders

Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD)

Sponsor

University of Bern

Enrollment

2,000 participants

Start Date

Jun 20, 2018

Study Type

OBSERVATIONAL

Conditions

DMD SMA BMD IMD Congenital Muscular Dystrophy

Summary

The Swiss Patient Registry for DMD/BMD and SMA was launched in 2008 in order to give Swiss patients access to new therapies. It was founded with the financial support of several patient organizations and research foundations. Since 2008, children, adolescents and adults with DMD, BMD and SMA are registered with the help of all major muscle centers in Switzerland. After nearly ten years of activity, the Swiss Patient Registry for DMD/BMD and SMA implemented several adaptations in 2018 to meet current and future expectations of patient's organizations, health authorities and research organizations.

Eligibility

Min Age: 0 Years

Plain Language Summary

Simplified for easier understanding

This is a national Swiss registry collecting data on patients of all ages who have a neuromuscular disease (NMD) — a group of conditions that affect the muscles and the nerves that control them, such as muscular dystrophy, spinal muscular atrophy, and peripheral neuropathies. The registry aims to improve understanding of these rare diseases across the population. You may be eligible if: • You are a child, teenager, or adult diagnosed with a neuromuscular disease • You live in Switzerland or are receiving treatment for a neuromuscular disease in Switzerland • You have given informed consent (or your guardian has, if applicable) You may NOT be eligible if: • Your diagnosis has not been confirmed by genetic testing, muscle biopsy, or nerve/muscle electrical testing (EMG) where those tests are applicable Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(19)

Cantonal Hospital Aarau

Aarau, Canton of Aargau, Switzerland

Pediatric Institute of Southern Switzerland, Ospedale San Giovanni

Bellinzona, Canton Ticino, Switzerland

Neuro Centre of Italian Switzerland, Ospedale Regionale di Lugano

Lugano, Canton Ticino, Switzerland

University Hospital Lausanne CHUV, Children's Hospital

Lausanne, Vaude, Switzerland

University Hospital Lausanne CHUV

Lausanne, Vaude, Switzerland

University Children's Hospital Basel

Basel, Switzerland

University Hospital Basel

Basel, Switzerland

Inselspital Bern, Children's Hospital

Bern, Switzerland

Inselspital Bern

Bern, Switzerland

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

Bern, Switzerland

University Hospitals of Geneva, Children's Hospital

Geneva, Switzerland

University Hospitals of Geneva

Geneva, Switzerland

Cantonal Hospital of Lucerne LUKS

Lucerne, Switzerland

Cantonal Hospital of Lucerne, LUKS

Lucerne, Switzerland

Private Practice Alpenquai

Lucerne, Switzerland

Cantonal Hospital of Eastern Switzerland

Sankt Gallen, Switzerland

Children's Hospital of Eastern Switzerland

Sankt Gallen, Switzerland

University Hospital Zuerich, Children's Hospital

Zurich, Switzerland

University Hospital Zuerich

Zurich, Switzerland

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NCT05102916

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