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DMD Care

Home / Resources and Support / Care Guides / DMD Care

Care Guides Duchenne Muscular Dystrophy

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Clinicians

The Diagnosis & Management of DMD

It is well-understood that receiving the best care can dramatically improve the quality of life and life expectancy of individuals with Duchenne muscular dystrophy, enabling them to lead fulfilling, independent lives into adulthood. The importance of international care recommendations cannot be underestimated.

A major international consensus document setting out best practice in care for Duchenne muscular dystrophy (DMD) was published in the Lancet Neurology journal in January and February 2010. The product of an extensive review process by 84 international experts in DMD diagnosis and care, this document is a unique guide to expert recommendations on the care that all individuals with DMD should receive.

The drafting of these guidelines was led by the US Centers for Disease Control (CDC) using a rigorous review process (known as the RAND/UCLA Appropriateness Method or RAM) that required experts to rate interventions and assessments used in the management of DMD for “appropriateness” or “necessity” at different stages of the condition. In total the expert panels considered more than 70 thousand different clinical scenarios.

In 2018,  significant update to these guidelines was published, this time, as three papers in the Lancet Neurology. In particular, these address three new topics in addition to the eight from 2010.

These international publications can be used by doctors, patients and families worldwide as a guide to the treatment that individuals with Duchenne should receive at each stage of the disease. They are also a valuable tool for lobbying at a national level to enable incorporation of these recommendations into national health systems. The guidelines represent real international consensus including both the medical and the patient advocacy perspectives and can be used across the world as a powerful tool to recognize those centres where best practice is already in place and to identify gaps in care.

Part 1: Diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management

Part 2: Respiratory, cardiac, bone health, and orthopaedic management

Part 3: Primary care, emergency management, psychosocial care, and transitions of care across the lifespan

The Imperatives of DMD

PPMD, UPPMD and TREAT-NMD have created a single-page summary of best-practice care in Duchenne muscular dystrophy (DMD). Based on the existing Care Considerations, it will broaden awareness of the “imperatives” in good DMD care, especially amongst non-specialists who are not familiar with the disease and will not have read the full Lancet publication or the condensed care guidelines developed for families.

To disseminate this information as widely as possible, we would be very pleased to hear from anyone who would like to translate the Imperatives into their local language.

PLOS have published an academic paper about the Imperatives of Duchenne.  We are delighted that this paper has now also been translated into Spanish.

Please contact info@treat-nmd.com if you can help!

The Imperatives of DMD are available for download in the following languages

Arabic 

Bulgarian 

Chinese Simplified 

Chinese Traditional 

Croatian 

Czech 

Dutch 

English UK

Farsi 

Finnish

French

Hebrew 

Italian 

Japanese 

Korean

Latvian

Polish 

Portuguese 

Russian 

Serbian

Slovak

Spanish 

Turkish 

Ukrainian 

Patients

Guide for Families

In 2018 the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organisation came together to produce a comprehensive Duchenne Guide for Families.

This guide uses updated recommendations to ensure that the very latest in care standards are accessible to all people living with Duchenne.

We provide the guide in a number of different formats and languages which are available to download below:

2018 DMD Family Care Guides

Arabic

Czech

English UK

English US

Finnish

French

German

Hebrew

Hindi

Korean

Lebanese

Norwegian

Portuguese (Brazil)

Punjabi

Romanian

Russian

Spanish

Turkish

Ukrainian

Macedonian

Filipino

Portuguese (Portugal)

If you are able to help with translating a family guide into your language please get in touch: info@treat-nmd.com 

To view the online version of the DMD family guide please visit our Online Family Guide website

The online version of the guide is available in a number of different languages with more in due course.

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