About the registry

What is the Swiss Registry for Neuromuscular Disorders?

The Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD) collects medical information from people with a neuromuscular disease. Currently, spinal muscular atrophy (SMA), Duchenne and Becker muscular dystrophy (DMD and BMD), LAMA2-related congenital muscular dystrophy (MDC1A), and collagen VI-related myopathy (COL-6) are covered. The registry is led by specialized physicians from all over Switzerland.

«Our goal is to improve the treatment and social inclusion
of people with a neuromuscular disease. »

Why do we need this registry ?

In recent years, great progress has been made in the field of research into neuromuscular diseases. New drugs are constantly being developed and tested. The registry helps patients to access therapeutic trials.

The Swiss-Reg-NMD aims to answer central questions such as “How are people with a neuromuscular disease in Switzerland?”, “How are they treated?”, “Which therapies are effective?” For that purpose, we collect detailed, health-related information from medical records (e.g. on diagnosis, therapies or medications). Additionally, we send questionnaires to the affected families to inquire about their needs, quality of life, education, nutrition, etc. The analysis of this data helps to optimize the treatment and inclusion of people with a neuromuscular disease in Switzerland.