Inclusion body myositis is the most commonly acquired myopathy after the age of 45. The slowly progressive and heterogeneous disorder is a challenge for measuring clinical trial efficacy. One current method for measuring progression utilizes the Inclusion Body Myositis-Functional Rating Scale. We have found that the upper extremity domain scores in the Inclusion Body Myositis-Functional Rating Scale do not consistently change until there is extreme loss of grip and finger flexor strength. Therefore, we performed a cross-sectional observational study of 83 inclusion body myositis patients and 38 controls recruited at the 2019 Annual Patient Conference of The Myositis Association. We evaluated new Inclusion Body Myositis Patient-Reported Outcome measures for upper extremity function modified from the NIH Patient-Reported Outcomes Measurement Information System as well as pinch and grip strength. We found that Patient-Reported Outcome measures hand-function have a higher correlation with pinch and grip strength than the Inclusion Body Myositis-Functional Rating Scale.

中文翻译：

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优化包涵体肌炎的手功能患者结果测量

包涵体肌炎是 45 岁以后最常见的获得性肌病。缓慢进展和异质性疾病是衡量临床试验疗效的挑战。一种当前用于测量进展的方法使用包涵体肌炎功能评定量表。我们发现，包涵体肌炎功能评定量表中的上肢领域分数不会持续变化，直到握力和手指屈肌力量极度丧失。因此，我们对在肌炎协会 2019 年年度患者大会上招募的 83 名包涵体肌炎患者和 38 名对照者进行了横断面观察研究。我们评估了从 NIH 患者报告结果测量信息系统修改的上肢功能以及捏和握力的新包涵体肌炎患者报告结果测量值。我们发现，与包涵体肌炎功能评定量表相比，患者报告的结果测量手功能与捏和​​握力的相关性更高。