Registry for patients with neuromuscular disorders in Switzerland
Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD)
This study is creating a database to help people in Switzerland with neuromuscular disorders, like DMD and SMA, get access to new treatments and participate in clinical trials.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 2000 (estimated) |
| Ages | 0 Years and up |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 19 sites (Aarau, Canton of Aargau and 18 other locations) |
| Trial ID | NCT05102916 on ClinicalTrials.gov |
What this trial studies
The Swiss Registry for Neuromuscular Disorders collects medical information from individuals diagnosed with conditions such as Duchenne-Becker Muscular Dystrophy (DMD/BMD), Spinal Muscular Atrophy (SMA), and LAMA2-related muscular dystrophy. Established in 2008, this registry aims to facilitate access to new therapies for Swiss patients by creating a centralized database that supports participation in therapeutic trials. The registry is managed by specialized physicians across Switzerland and has been adapted to meet evolving legal and patient needs. It aims to establish a representative cohort and provide valuable epidemiological data on these rare diseases.
Who should consider this trial
Good fit: Ideal candidates include children, adolescents, and adults diagnosed with neuromuscular disorders who are living or receiving treatment in Switzerland.
Not a fit: Patients who do not have a confirmed diagnosis of a neuromuscular disorder may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance access to innovative treatments for patients with neuromuscular disorders.
How similar studies have performed: Other registries for rare diseases have shown success in improving patient access to therapies and facilitating research, indicating a positive precedent for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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.
Where this trial is running
Aarau, Canton of Aargau and 18 other locations
- Cantonal Hospital Aarau — Aarau, Canton of Aargau, Switzerland (Recruiting)
- Pediatric Institute of Southern Switzerland, Ospedale San Giovanni — Bellinzona, Canton Ticino, Switzerland (Recruiting)
- Neuro Centre of Italian Switzerland, Ospedale Regionale di Lugano — Lugano, Canton Ticino, Switzerland (Recruiting)
- University Hospital Lausanne CHUV, Children's Hospital — Lausanne, Vaude, Switzerland (Recruiting)
- University Hospital Lausanne CHUV — Lausanne, Vaude, Switzerland (Recruiting)
- University Children's Hospital Basel — Basel, Switzerland (Recruiting)
- University Hospital Basel — Basel, Switzerland (Recruiting)
- Inselspital Bern, Children's Hospital — Bern, Switzerland (Recruiting)
- Inselspital Bern — Bern, Switzerland (Recruiting)
- Institute of Social and Preventive Medicine (ISPM), University of Bern — Bern, Switzerland (Recruiting)
- University Hospitals of Geneva, Children's Hospital — Geneva, Switzerland (Recruiting)
- University Hospitals of Geneva — Geneva, Switzerland (Recruiting)
- Cantonal Hospital of Lucerne LUKS — Lucerne, Switzerland (Recruiting)
- Cantonal Hospital of Lucerne, LUKS — Lucerne, Switzerland (Recruiting)
- Private Practice Alpenquai — Lucerne, Switzerland (Recruiting)
- Cantonal Hospital of Eastern Switzerland — Sankt Gallen, Switzerland (Recruiting)
- Children's Hospital of Eastern Switzerland — Sankt Gallen, Switzerland (Recruiting)
- University Hospital Zuerich, Children's Hospital — Zurich, Switzerland (Recruiting)
- University Hospital Zuerich — Zurich, Switzerland (Recruiting)
Study contacts
- Principal investigator: Claudia E Kuehni, Prof. MD — Institute of Social and Preventive Medicine (ISPM), University of Bern
- Study coordinator: Claudia E Kuehni, Prof. MD
- Email: swiss-reg-nmd.ispm@unibe.ch
- Phone: +41 (0)31 684 35 07
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.