Introduction to Congenital Muscular Dystrophy
Congenital muscular dystrophies are progressive conditions which progress at a slow rate. Learning difficulties may be present but do not deteriorate over time. Within the CMD’s there is a wide spectrum of severity and there are several disorders within the subtype of CMD.
The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopaedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, two separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009.