The development and validation of measures of disease activity, damage, and health-related quality of life (HRQOL) over the past 30 years has been fundamental in advancing research and care for patients with adult and juvenile idiopathic inflammatory myopathies (IIMs).1 These efforts have resulted in the development of core set measures of disease activity and damage for myositis, and the American College of Rheumatology (ACR)/European Alliance of Associations for Rheumatology (EULAR)-endorsed Myositis Response Criteria, which have been successfully implemented in IIM clinical trials and which recently facilitated the US Food and Drug Administration licensure of intravenous immunoglobulin for dermatomyositis (DM).2-5.

中文翻译：

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患者声音中的响声：测量患者对皮肌炎症状的生活经历。


在过去 30 年中，疾病活动、损伤和健康相关生活质量 （HRQOL） 测量的开发和验证对于推进成人和青少年特发性炎症性肌病 （IIM） 患者的研究和护理至关重要。这些努力导致了肌炎疾病活动和损害的核心测量方法的开发， 以及美国风湿病学会 （ACR）/欧洲风湿病协会联盟 （EULAR） 认可的肌炎反应标准，该标准已在 IIM 临床试验中成功实施，最近促进了美国食品和药物管理局获得静脉注射免疫球蛋白治疗皮肌炎 （DM） 的许可2-5。