Standards of Care for Duchenne Muscular Dystrophy: Brief Treat-NMD Recommendations
Standards of Care for Duchenne Muscular Dystrophy: Brief Treat-NMD Recommendations
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DOI：
10.1007/978-90-481-2813-6_2
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发表时间：
2009-01-01
期刊：
影响因子：
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通讯作者：
Bushby, Kate
中科院分区：
文献类型：
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作者：
Sejerson, Thomas;Bushby, Kate
对杜氏肌营养不良症（DMD）患者的护理标准化较差。在不同的系统中有许多干预措施可以改善DMD的结果，但这些措施并不统一。这导致获得治疗的不平等，以及规划未来治疗的对照试验的问题。一项全球性的努力正在进行中，以制定DMD的护理指南，其中涉及美国疾病控制中心和欧洲神经肌肉疾病卓越网络。在完整的共识文件之前，联合国国家导弹防御系统已经着手制定DMD的简要护理标准，这些标准在这里介绍，并可通过联合国国家导弹防御系统网站（www.treat-nmd.eu）获得。指南介绍了诊断、神经学随访、胃肠和营养问题、呼吸和心脏护理以及整形外科、康复、心理社会干预和口腔护理。
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 (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.