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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.

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.

Care Guidelines

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

Download the Care Guidelines for Duchenne:


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 

These recommendations, presented in two parts, are intended for the wide range of practitioners who care for individuals with Ducehnne. They provide a framework for identifying and managing the symptoms of Duchenne and for providing coordinated multidisciplinary care. Right now there are not separate recommendations for Becker muscular dystrophy.
 

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