Swiss Registry for Neuromuscular Disorders
Swiss Registry for Neuromuscular Disorders
A recent survey study conducted by the Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD) looked at how children and teens with Duchenne muscular dystrophy (DMD) in Switzerland experience school, social life, and everyday difficulties. Forty participants aged 8 to 18 took…
Spinal muscular atrophy (SMA) is an inherited muscle disease. Current treatments for SMA have been shown to significantly improve the course of the disease, but long-term outcome data remains scarce. This study looked at patients registered in the Swiss-Reg-NMD with…
LAMA2-related muscular dystrophy (LAMA2-RD) is an inherited muscle disease. With new treatments being developed, there is increasing interest in learning more about how often LAMA2-RD occurs and how it progresses over time. This study looked at a group of patients…
Chronic pain is common in various neuromuscular diseases. However, not much is known about it in people with spinal muscular atrophy (SMA). We studied how often chronic pain occurs in children, teenagers and adults with SMA and what factors influence…
People with Duchenne muscular dystrophy (DMD) often lack suitable educational opportunities and leisure activities. We conducted a survey to find out what impact Covid-19 has had on school attendance and leisure activities for children and young people with DMD. 40…
Spinal muscular atrophy (SMA) is a severe neurodegenerative disease. For a few years now, SMA can be treated with genetic therapies. These new therapies include the gene therapy Zolgensma®. Zolgensma® has been approved in Switzerland for the treatment of children…
We have recently updated the study information. In order to be able to fulfil our tasks, we depend also on the financial support of the pharmaceutical companies. In contrast to the past, the pharmaceutical companies often want a report in…
Spinraza® (nusinersen) is a drug for the treatment of children and adults with spinal muscular atrophy (SMA). In recent years, clinical studies have shown that Spinraza® can improve muscle strength and motor function. With our study we aimed to find…