Keret Shiri, Silva Raisa Lomanto, Chandra Tanya, Gkiaouraki Eugenia, Pongtarakulpanit Nantakarn, Sriram Shreya, Moghadam-Kia Siamak, Oddis Chester V, Aggarwal Rohit
Rheumatology Unit, Bnai-Zion Medical Center, Faculty of Medicine, Technion, Haifa, Israel.
Internal Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
Rheumatology (Oxford). 2025 Apr 1;64(4):2099-2105. doi: 10.1093/rheumatology/keae467.
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.
'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.
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).
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.
特发性炎性肌病（IIM）较为罕见，具有表现多样和临床病程各异的特点。利用远程研究方法有可能改善参与者招募情况，并增进对该疾病的了解。我们旨在评估全美IIM患者的疾病特征，并比较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。
“以患者为中心的肌炎远程研究”（My PACER）是一项针对美国IIM受试者的多中心前瞻性观察性研究，通过传统的面对面诊所就诊[基于中心的队列（CBC）]以及使用移动应用程序或网站和社交媒体进行远程招募[远程研究队列（TRC）]。数据收集包括基线人口统计学和临床变量，涵盖症状、器官受累情况、诊断检查结果和药物使用情况。
该研究纳入了120例IIM患者，其中TRC组82例，CBC组38例。平均年龄为55±13.4岁，75%为女性，81%为白种人。两个队列的人口统计学特征相似。总体而言，纳入了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，各队列中亚型患病率相当（P = 0.85）。两组在多个临床因素上表现出相似性，包括肌肉酶、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组患者更频繁地接受生物制剂和传统合成改善病情抗风湿药（分别为P < 0.001和P = 0.013）。
远程研究招募产生了一个在人口统计学和临床上与传统招募患者相似的患者队列，表明其在临床研究中进行有力且多样化患者招募方面的有效性。
