Registry for patients with neuromuscular disorders in Switzerland

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• AOC 1044 in Duchenne Muscular Dystrophy with Exon 44 Skipping

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• Machine-learning multi-sensor fall risk screening for Duchenne muscular dystrophy

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.