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Care Consideration Guidelines

Care Considerations Guideline

Over the past several decades, perhaps the greatest advance in the fight to end Duchenne is in the way we care for people with Duchenne and Becker. Although there is not yet a cure for Duchenne or Becker, there are accepted treatments and therapies that can reduce symptoms and improve quality of life.

Some clinics will do more than is recommended, but no clinics should do less than what is recommended. Ensure that your child is getting the best care available. Talk to your healthcare team about the care guidelines.

Download the Duchenne Care Consideration Guidelines

Parent Project Muscular Dystrophy takes its role as the leader in the Duchenne community very seriously, and insisted that standards of care be put in place. The result is that people with Duchenne are living longer, healthier, happier lives.

NEW! 2018 Guidelines

As of January 24, 2018, the CDC has published updated Care Considerations for Duchenne in The Lancet Neurology. Since first being published in 2010, significant advances in Duchenne research and care made it evident that an update to these standards of care was long overdue. Later this spring, a family-friendly version of these standards of care will be released.

Academic Article

"Family-Friendly" Version

  • A family-friendly version of these standards of care is currently in development and will be released in the Spring.

Previous 2010 Guidelines

Academic Article

"Family-Friendly" Version

Single-Page Summary (Imperatives)

Imperatives for Duchenne MD [PDF] is a very focused and very brief, single-page snapshot of the imperative components of comprehensive Duchenne care as described in the Care Considerations. This information is meant for health care providers, but can also be used by patients and parents advocating for comprehensive Duchenne care for themselves or their children.

About the Guidelines

The US Centers for Disease Control and Prevention selected 84 clinicians to develop care recommendations using the RAND Corporation-University of California Los Angeles Appropriateness Method.

The DMD Care Considerations Working Group evaluated assessments and interventions used in the management of aspects of Duchenne, including:

  • Diagnostics
  • Gastroenterology and Nutrition
  • Rehabilitation
  • Neuromuscular
  • Psychosocial
  • Cardiovascular
  • Respiratory
  • Orthopaedic
  • Surgical 

Related links

Explore by Area
Explore by Stage
Surgery & Anesthesia Precautions
Emergency Care Information
Certified Duchenne Care Centers

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