2018 Duchenne Care Considerations | DuchenneXchange

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Guides & Guidelines

2018 Duchenne Care Considerations

key information

source: TREAT-NMD

summary/abstract:

It is recognized that receiving the best care can dramatically improve the quality of life and life expectancy of individuals with DMD, enabling them to lead fulfilling, independent lives into adulthood. The importance of care recommendations such as these therefore cannot be underestimated. The international guidelines, which cover the diagnostics, cardiovascular, neuromuscular, gastroenterology/nutrition, orthopaedic/surgical, psychosocial, rehabilitation and respiratory fields, 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 centers where best practice is already in place and to identify gaps in care.

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