Objectives This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. Methods A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. Results A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter. Conclusions Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.

中文翻译：

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开发用于临床的青少年皮肌炎共识核心数据集，为研究提供信息

目标 本研究旨在就国际公认的青少年皮肌炎 (JDM) 数据集达成共识，该数据集专为临床使用而设计，以加强合作研究并允许中心之间的数据整合。方法 原型数据集是通过一个正式的过程开发的，其中包括分析现有特发性炎症性肌病患者数据库中的项目。该模板用于帮助结构化的多阶段共识过程。利用 Delphi 方法，向护理 JDM 患者的医疗保健专业人员分发了两份基于网络的问卷，这些 JDM 患者通过国际儿科风湿病和肌炎研究小组的电子邮件分发列表确定。向 JDM 儿童和 JDM 患者的父母发送了一份单独的问卷，通过已建立的研究网络和患者支持小组确定。这些平行过程的结果为国际肌炎专家的面对面名义小组共识会议提供了信息，该会议的任务是定义数据集的内容。这个开发的数据集在审查和最终确定之前在常规临床实践中进行了测试。结果 包含 123 个项目的数据集与随附的词汇表一起制定。人口统计和诊断数据仅包含在基线访问时收集的表 A 中，疾病活动测量包含在每次访问时收集的表 B 中，表 C 中包含在基线和之后的年度访问时收集的疾病损害项目。结论 通过稳健的国际进程，已经制定了 JDM 的共识数据集，可以随时间记录疾病活动和损害。