The Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD) collects medical information from people in Switzerland diagnosed with a neuromuscular disorder. The registry currently includes children and adults with:
- Duchenne/Becker Muscular Dystrophy (DMD/BMD)
- Spinal Muscular Atrophy (SMA)
- Merosin-deficient muscular dystrophy, also called LAMA2-related muscular dystrophy (MDC1A / LAMA2)
- COL6-related dystrophies (COL6)
Patients with Pompe disease will be included in the next phase.
Objectives of Swiss-Reg-NMD:
- Register and collect key health data from all patients with a neuromuscular disorder living in Switzerland
- Support patient participation in national and international clinical studies
- Support the development of study centers in Switzerland
- Promote nationally aligned standards for diagnosis and care
- Provide a national platform for post-marketing surveillance of therapies
- Provide answers on health care, quality of life, and social, educational, and family-related support needs
- Promote knowledge exchange between clinics, therapists, researchers, and Swiss health authorities
- Facilitate national and international research collaborations
The registry operates under ethics approval (20.06.2018).
www.swiss-reg-nmd.ch