Updated DMD Care Considerations Aim to Improve Patient Care

With the goal to improve diagnosis and care for people living with Duchenne muscular dystrophy (DMD), the Centers for Disease Control (CDC) today published updated Care Considerations for DMD.

The comprehensive set of clinical care recommendations, drafted by a steering committee of experts from a wide range of disciplines with support from MDA, offers care providers guidelines for diagnosing DMD and managing its symptoms.

Today’s update expands on the original guidelines first published in 2010.

The new care considerations are designed to:

  • address the needs of older patients, reflecting prolonged survival;
  • provide guidance on approaches to medical assessment and intervention; and
  • examine the genetic and molecular therapies that are now emerging for DMD.

The updated guidance includes 11 topics, eight of which were addressed in the original care considerations. Those eight include diagnostics, management of corticosteroids, cardiac care, pulmonary care, physical therapy/physical medicine and rehabilitation, gastrointestinal and nutritional needs, orthopedic and surgical considerations, and psychosocial care. The three new topics are primary care and emergency management, endocrine management, and transitions of care across the lifespan.

To ensure that families have access to the information provided in the Care Considerations, MDA is collaborating with World Duchenne Organization (UPPMD), TREAT-NMD and Parent Project Muscular Dystrophy (PPMD) to create a family-friendly version. The Family Guide currently is under development and is expected to be released in spring 2018.

Until then, you can download PDFs and read the new care considerations in three parts: Part 1Part 2Part 3.

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