Standard of Care for CMD

Congenital muscular dystrophy (CMD) is a rare inherited neuromuscular disorder, with a wide range of phenotypes that makes diagnosis difficult. In order to provide the best way for clinicians to make a diagnosis and provide an expert guide to care, the international community has developed guidelines that address the following areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/nutrition/speech/oral care, cardiology, and palliative care. The guidelines cover at length assessment and currently available treatments for the most common problems in CMD — orthopedic deformity of the limb, joint, and spine. The guidelines provide specific recommendations about preventive care to slow disease progression, such as proper respiratory support. The Consensus Statement on Standard of Care for Congenital Muscular Dystrophies can be downloaded here.

The CMD Family Guide is now also available from the TREAT-NMD website.