Standards of Care for Duchenne Muscular Dystrophy: Brief Treat-NMD Recommendations
- 14 September 2009
- book chapter
- research article
- Published by Springer Science and Business Media LLC in Advances in Experimental Medicine and Biology
- Vol. 652, 13-21
- https://doi.org/10.1007/978-90-481-2813-6_2
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.This publication has 6 references indexed in Scilit:
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