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.
Standards of Care Update
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. In 2018, the updated Care Considerations were published in Lancet Neurology and can be downloaded below.
Guide for Families
The updated Guide for Families (download) can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc. We are hopeful that you will find this a useful tool for all those you are in contact with along this journey – parents, grandparents, teachers, physicians.
Download Guide for Families >Care Checklists
PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression. These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
- Download care checklist for early ambulatory/childhood (PDF)
- Download care checklist for late ambulatory (PDF)
- Download care checklist for early non-ambulatory (PDF)
- Download care checklist for late non-ambulatory (PDF)
Academic Articles
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]
The Imperatives: A Single-Page Summary
Pediatric Imperatives
Imperatives for Duchenne MD (download)* is a very focused and very brief, single-page snapshot of the imperative components of comprehensive pediatric Duchenne care as described in the Care Considerations. This document is intended as a snapshot of care from diagnosis through early adolescence, helpful for medical providers who may not be familiar with this diagnosis.
Download the PediatricImperatives >
*Also available in Spanish.
Adult Imperatives
The Adult Imperatives for Duchenne MD (download) describes the imperative components of transitions of care across late adolescence and adulthood as described in the Care Considerations. This document is intended as a brief, single page snapshot of care, helpful for medical providers who may not be familiar with caring for adult men living with Duchenne.
Download theAdult Imperatives >
