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Care Consideration Guidelines
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.
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.
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.
"Family Friendly" Version
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.
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:
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