The supplement “Specialty Care for the Patient with Duchenne Muscular Dystrophy” was recently published in the October 2018 issue of Pediatrics. The supplement aims to raise the standard of care and improve quality of life for those living with Duchenne.  

These publications are an extension of the CDC Care Considerations that yielded from the MD CARE Act of 2014 and the advocacy of PPMD and our Duchenne community. Numerous members of our community served as contributors and authors to these publications including PPMD’s Kathi Kinnett, Annie Kennedy, representatives from the PPMD Adult Advisory Committee, and clinical experts from the Certified Duchenne Care Center Program (CDCCP). We are proud that PPMD’s CDCCP was used as the primary model for evaluating implementation of care in standards in this article.

Special thanks to the American Academy of Pediatrics, an organization of 67,000 primary care pediatricians, pediatric medical sub-specialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

What’s covered

The supplement includes the following Duchenne/Becker specialty care publications (click here to download):

• An Introduction to the Duchenne Muscular Dystrophy Care Considerations
• Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy
• A Transition Toolkit for Duchenne Muscular Dystrophy
• Psychosocial Management of the Patient With Duchenne Muscular Dystrophy
• Primary Care and Emergency Department Management of the Patient With Duchenne Muscular Dystrophy
• Orthopedic and Surgical Management of the Patient With Duchenne Muscular Dystrophy
• Cardiac Management of the Patient With Duchenne Muscular Dystrophy
• Respiratory Management of the Patient With Duchenne Muscular Dystrophy
• Nutritional and Gastrointestinal Management of the Patient With Duchenne Muscular Dystrophy
• Obesity and Endocrine Management of the Patient With Duchenne Muscular Dystrophy
• Bone Health and Osteoporosis Management of the Patient With Duchenne Muscular Dystrophy
• Rehabilitation Management of the Patient With Duchenne Muscular Dystrophy
• Neurology Care, Diagnostics, and Emerging Therapies of the Patient With Duchenne Muscular Dystrophy

How to use these publications

These publications are meant to serve as a complement to the updated CDC Care Considerations that were recently published. It is important that families make sure that their subspecialty clinicians are aware of these new supplements and that they are integrated in to their care plans. PPMD is also working to incorporate this information into the Care pages of our website.