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Standards of Care

International guidelines on Duchenne care

Ever since the initial Care Considerations for Duchenne muscular dystrophy (DMD) were published in 2010, clinical care of this rare disease has evolved. In 2014, a group of experts from various fields worked on updating the 2010 Care Considerations. Their goal was to improve patient care.

The new considerations, also called the latest Standards of Care, aim to address the needs of patients to live longer, give guidance on assessment and treatment options, and consider the implications of genetic and molecular therapies for DMD.

The publications can be found in the Lancet Neurology:

  1. Diagnosis, and neuromuscular, rehabilitation, endocrine, gastrointestinal and nutritional management. Read more >
  2. Respiratory, cardiac, bone health, and orthopedic management in Duchenne muscular dystrophy. Read more >
  3. Primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Read more >

Publications From The Lancet Neurology

The Lancet Neurology

Diagnosis and management of Duchenne muscular dystrophy

Updated Family Guide

Standards of Care

In line with the three articles about care considerations for DMD recently published in Lancet Neurology 1-3, a new Duchenne Family Guide has been developed and was launched online on World Duchenne Awareness Day, September 7, 2018.

The development of the updated care considerations was funded by the U.S. Center for Disease Control. These updates offer the latest clinical considerations to improve care, services, and quality of life for people living with Duchenne, raise the standards of care for Duchenne and will assist clinicians in making the best possible recommendations for these patients.

Thanks to the collaboration of four not-for-profit organizations — the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organization — a thoroughly updated and re-drafted Duchenne Family Guide was developed.

This guide will give patients, families and caregivers access to the information necessary to enable them to work with their health care and support providers in ensuring optimal care. The Duchenne Family Guide will be translated and published online on the TREAT-NMD website in many languages, with the help of the global Duchenne community.