Care Guidelines

Over the past several decades, perhaps the greatest advances in the fight to end Duchenne have been in care for people living with Duchenne and Becker. Although there is not yet a cure for Duchenne or Becker, there are accepted recommended treatments and therapies that can help people with Duchenne live longer, healthier lives.

Some clinics will do more than is recommended, but no clinics should do less than what is recommended. If you are being cared for at a PPMD Certified Duchenne Care Center, you can be sure that your neuromuscular team is meeting the standards of these guidelines. However, other clinics may also be providing optimal care that are not yet certified. Wherever you go for care, you should feel comfortable talking to your neuromuscular team about these guidelines and asking questions to ensure you are receiving optimal care.

Download the Guidelines

2018 Academic Article

In partnership with the US Centers for Disease Control and Prevention (CDC), PPMD advocates for and participates in the development, and updates, of standards of care for Duchenne. 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 necessary. While the original Care Considerations approached Duchenne from the pediatric perspective, there is now a growing population of adults who also deserve the highest standard of Duchenne care. For this reason, each subspecialty area has developed standards of care across the lifespan, from diagnosis to adulthood.

The new 2018 Academic Articles can be downloaded and shared with your neuromuscular team:

  • Part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management [PDF]
  • Part 2: respiratory, cardiac, bone health, and orthopaedic management [PDF]
  • Part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan [PDF]

Family Guide

PPMD is leading a collaborative effort to develop an updated family-friendly version of the newly published 2018 Academic Articles. Working with TREAT NMD, World Duchenne Organization (formally UPPMD), and the Muscular Dystrophy Association (MDA), this new Family Guide will be released in mid-2018.

The original Family Guide, based on the 2010 guidelines, can be downloaded below:

  • 2010 Family Friendly version: With Images [PDF]
  • 2010 Family Friendly version: Printer-Friendly Version [PDF]
  • Additional languages available via TREAT-NMD

Single-Page Summary

Imperatives for Duchenne MD 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 document is intended as a snapshot of care, helpful for medical providers who may not be familiar with this diagnosis.

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