What are the CDC recommendations for management of Duchenne muscular dystrophy (DMD)?

Updated: Aug 17, 2020
  • Author: Twee T Do, MD; Chief Editor: Jeffrey D Thomson, MD  more...
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In 2009 and 2010, the CDC published a comprehensive set of DMD care recommendations that include the following topics [72, 73] :

  • Rehabilitation
  • Orthopedic
  • Respiratory
  • Cardiovascular
  • Gastroenterology/nutrition
  • Pain issues
  • General surgery and emergency room precautions

Part 1 of the CDC guidelines focused on diagnosis and pharmacologic and psychosocial management. [72] Part 2 outlined the implementation of multidisciplinary care for DMD patients. [73]  These guidelines were affirmed by the American Academy of Neurology (AAN) and endorsed by the Muscular Dystrophy Association (MDA) and the TREAT-NMD Neuromuscular Network.

The guidelines require a multidisciplinary approach due to the range of expertise needed to care for DMD patients. The role of coordinating clinical care could be assumed by a neurologist or pediatric neurologist, rehabilitation specialist, neurogeneticist, pediatric orthopedist, pediatrician or other primary care physician. This physician must have access to information on health maintenance and proper monitoring of disease progression and complications to provide anticipatory, preventive care, and optimum management. [72]

In addition, the guidelines note that logistical management of the patient in the clinic requires a physically accessible environment with proper equipment (eg, mechanical hoist or sliding board) and trained personnel available for the safe transfer of the nonambulatory patient. Appropriately trained staff with the expertise and means to obtain accurate measures of weight, height, and vital signs is also needed. [72]

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