Objectives Idiopathic inflammatory myopathies (IIM) are rare and characterized by heterogeneous manifestations and clinical trajectories. Utilizing tele-research methods has the potential to improve participant recruitment and advance the understanding of the disease. We aimed to evaluate disease characteristics in IIM patients throughout the USA and compare these parameters between patients recruited remotely through mobile application or website vs those recruited locally in myositis clinics. Methods ‘Myositis Patient Centered Tele-Research’ (My PACER) is a multicentre prospective observational study of US IIM subjects, competitively recruited through traditional in-person clinic visits [centre-based cohort (CBC)] and remotely using mobile application or website and social media [tele-research cohort (TRC)]. Data collection comprised baseline demographic and clinical variables, encompassing symptoms, organ involvement, diagnostic tests results and medication use. Results The study included 120 IIM patients, 82 in the TRC and 38 in the CBC. The average age was 55 ± 13.4, 75% females and 81% Caucasians. Both cohorts exhibited similar demographic characteristics. Overall, 41% dermatomyositis, 27% polymyositis, 23% anti-synthetase syndrome, and 9% necrotizing myositis patients were enrolled, with comparable subtypes prevalence among cohorts (P = 0.85). The groups demonstrated similarities in multiple clinical factors, including muscle enzymes, diagnostic delay, employment status, various patient and physician-reported outcomes, functional tests, and the frequency of abnormal findings in chest CT, pulmonary function tests and electromyography. TRC patients received biologics and csDMARDs more frequently (P < 0.001 and P = 0.013, respectively). Conclusion Tele-research recruitment yielded a patient cohort resembling traditionally recruited patients demographically and clinically, indicating its effectiveness for robust and diverse patient recruitment in clinical studies.

中文翻译：

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特发性炎症性肌病的疾病特征和药物使用：分散式远程与传统诊所入组的多中心前瞻性观察研究


目的 特发性炎症性肌病 （IIM） 罕见，以异质性表现和临床轨迹为特征。利用远程研究方法有可能改善参与者招募并促进对疾病的理解。我们旨在评估全美 IIM 患者的疾病特征，并将通过移动应用程序或网站远程招募的患者与在肌炎诊所本地招募的患者之间的这些参数进行比较。方法“肌炎患者为中心的远程研究”（My PACER） 是一项针对美国 IIM 受试者的多中心前瞻性观察研究，通过传统的面对面门诊就诊 [基于中心的队列 （CBC）] 和使用移动应用程序或网站和社交媒体 [远程研究队列 （TRC）] 进行竞争性招募。数据收集包括基线人口统计学和临床变量，包括症状、器官受累、诊断测试结果和药物使用。结果 该研究包括 120 例 IIM 患者，其中 82 例在 TRC 中，38 例在 CBC 中。平均年龄为 55 ± 13.4 岁，75% 为女性，81% 为白种人。两个队列表现出相似的人口统计学特征。总体而言，41% 的皮肌炎、27% 的多发性肌炎、23% 的抗合成酶综合征和 9% 的坏死性肌炎患者被纳入，队列中的亚型患病率相当 （P = 0.85）。这些组在多个临床因素上表现出相似性，包括肌酶、诊断延迟、就业状况、各种患者和医生报告的结果、功能测试以及胸部 CT、肺功能测试和肌电图异常发现的频率。TRC 患者接受生物制剂和 csDMARD 的频率更高 （P < 0.001 和 P = 0.013）。 结论 远程研究招募产生了一个在人口统计学和临床上类似于传统招募的患者的患者队列，表明其在临床研究中稳健和多样化地招募患者的有效性。