摘要：

Duchenne 型肌营养不良症诊断与护理家庭指南手册是在欧洲神经肌肉病治疗协会主导下，与美国肌营养不良协会、美国家庭患者肌营养不良协会和世界家庭患者肌营养不良协会共同合作完成，并得到美国疾病控制与预防中心为期3 年的资金支持。指南连续两期刊登在Lancet Neurol，从不同学科视角对Duchenne 型肌营养不良症进行全方位的研究和评价，内容涵盖诊断，激素治疗，康复管理，矫形治疗，呼吸肌、心脏和胃肠道护理，社会心理治疗，外科手术及急诊注意事项等各方面，推荐为首选的Duchenne型肌营养不良症诊断与治疗指南。

关键词: 肌营养不良, 杜氏, 家庭, 指南, 综述

Abstract:

The guideline "Diagnosis and management of Duchenne muscular dystrophy" was supported by a 3-year-long project guided by US Centers for Disease Control and Prevention (CDC), in collaboration with patient advocacy groups [Muscular Dystrophy Association (MDA), Parent Project Muscular Dystrophy (PPMD) and United Parent Projects Muscular Dystrophy (UPPMD)] and Translational Research in Europe: Assessment and Treatment of Neuromuscular Disease (TREAT-NMD) network. The main document was published in Lancet Neurol in 2010. The recommendations are based on an extensive study by 84 international experts in Duchenne muscular dystrophy (DMD) diagnosis and care who were chosen to represent a broad range of specialties. This guideline covers diagnostics, steroid treatment, rehabilitation, orthopedics, pulmonary, cardiac, gastrointestinal, psychosocial, surgical and emergency management of DMD. This guideline is recommended as the first choice by TREAT-NMD for DMD diagnosis and care.

Key words: Muscular dystrophy, Duchenne, Family, Guidelines, Review