Swiss Registry for Neuromuscular Disorders Collecting Data on DMD, BMD, SMA and Related Conditions in Switzerland

What this Trial Is About

The registry collects medical information from children, adolescents, and adults living or treated in Switzerland who have been diagnosed with neuromuscular disorders such as Duchenne-Becker Muscular Dystrophy DMDBMD, Spinal Muscular Atrophy SMA, merosin-deficient muscular dystrophy LAMA2-related muscular dystrophy, and Collagen 6 related muscular dystrophy. The purpose is to establish a comprehensive Swiss cohort, provide epidemiological data, support clinical research, and facilitate communication between clinics, researchers, and health authorities. It was reorganized in 2018 to meet legal requirements and expectations of patients and research organizations. Participants diagnosed with these neuromuscular disorders are registered in the Swiss-Reg-NMD after giving informed consent. Data collection includes baseline medical information at diagnosis and follow-up data annually up to 80 years. The registry gathers clinical data, questionnaire responses, and links to routine statistics and other medical registries to cover disease severity, medical care, therapies, hospitalizations, motor function, socio-demographics, quality of life, and more. Participants will be involved through their treating physicians who inform them about the registry during consultations. The registry collects information on diagnosis, symptoms, family history, medical investigations, changes in living status, motor and cognitive functions, therapies, hospitalizations, side effects, and participation in clinical trials. Data protection measures ensure confidentiality and secure handling of personal health information. The study continues to monitor and collect data over many years to support research and patient care.

Swiss Registry for Neuromuscular Disorders