Standards of care for neuromuscular diseases

Building international consensus on disease management and patient care

TREAT-NMD is working with leading specialists worldwide to create international consensus on care and management for patients suffering from neuromuscular diseases.

Receiving the best care can dramatically improve patients' quality of life and even prolong life expectancy. However, the relative rarity of the individual neuromuscular diseases means that until recently there has not been any consensus among doctors about how best to care for patients, and care standards differ not only from country to country but also even within individual countries.

Not only does this impact on quality of life, it also makes clinical trials of promising new treatments much harder to carry out, because it is impossible to compare results from different centres if patients are cared for in different ways.

Recent progress

TREAT-NMD has a team dedicated to working on this issue and the TREAT-NMD website will host user-friendly versions of a range of documents relating to patient care. This is a work in progress, and new documents will continue to appear here in the near future.

SMA patient care

Our first major achievement is TREAT-NMD's publication of a user-friendly précis of an important document for care of patients with spinal muscular atrophy (SMA). The Consensus Statement for Standard of Care in Spinal Muscular Atrophy was recently published in the Journal of Child Neurology by an international group of experts, the International Standard of Care Committee for SMA. TREAT-NMD, led by Thomas Sejersen of the Swedish Karolinska Institute, has been working with this group to create a user-friendly précis of these recommendations.

Click here to visit our special SMA section, where you can browse the summary online or download and print useful factsheets or the full published article.

DMD patient care

Visit our DMD section to view and download the latest recommendations.