The ‘Swiss registry for neuromuscular disorders’ (Swiss-Reg-NMD) collects medical information from people with neuromuscular disorders. The registry currently includes children and adults living in Switzerland who are diagnosed with Duchenne-Becker Muscular Dystrophy (DMD/BMD), Spinal Muscular Atrophy (SMA) and recently also merosin-deficient muscular dystrophy also called LAMA2-related muscular dystrophy (MDC1A respectively LAMA2). The Swiss-Reg-NMD pursues the following objectives:
• to register and to collect relevant health data of any patient affected by a neuromuscular disorder living in Switzerland
• to facilitate the participation of patients in National and International therapeutic trials • to facilitate the establishment of study centers in Switzerland
• to harmonize diagnosis and care on a national level (standards of care)
• to establish a national platform for Post-Marketing Surveillance
The registry operates now according to the new ethics approval (20.06.2018).