Standards of care for Duchenne muscular dystrophy: brief TREAT-NMD recommendations

Thomas Sejerson, Kate Bushby, TREAT-NMD EU Network of Excellence

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review

29 Citations (Scopus)

Abstract

Care for patients with Duchenne muscular dystrophy (DMD) is poorly standardised. There are many interventions in different systems which are known to improve outcomes in DMD but these are not uniformly applied. This leads to inequality in access to treatment, as well as problems for planning controlled trials of future therapeutics. A worldwide effort is underway to generate care guidelines for DMD, which involves the Centre for Disease Control in the USA and the TREAT-NMD network of excellence for neuromuscular diseases in Europe. In advance of the full consensus document, TREAT-NMD has worked on the generation of brief standards of care for DMD, which are presented here and are available via the TREAT-NMD website (http://​www.​treat-nmd.​eu). Guidelines are presented for diagnostics, neurological follow up, gastrointestinal and nutritional issues, respiratory and cardiac care as well as orthopaedics, rehabilitation, psychosocial interventions and oral care.
Original languageEnglish
Title of host publicationInherited Neuromuscular Diseases
Subtitle of host publicationTranslation from Pathomechanisms to Therapies
EditorsCarmen Espinós, Vicente Felipo, Francesc Palau
PublisherSpringer Netherlands
Pages13-21
Number of pages9
Volume652
ISBN (Electronic)978-90-481-2813-6
ISBN (Print)978-90-481-2812-9
DOIs
Publication statusPublished - 2009

Publication series

NameAdvances in Experimental Medicine and Biology
PublisherSpringer Netherlands
Volume652
ISSN (Print)0065-2598
ISSN (Electronic)0065-2598

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