CLUSTER anti-TNF clinical dataset

This data dictionary describes the CLUSTER anti-TNF clinical dataset. It contains key variables of interest for measuring treatment response to tumour necrosis factor inhibitors (anti-TNF) in juvenile idiopathic arthritis (JIA) patients at baseline/timepoint 1 (start of anti-TNF treatment or up to 3 months before) and timepoint 2 (6 months after baseline, within a 3-12 month window). If a patient had multiple visits within a timepoint window, the one closest to baseline/6 months was selected. There are 2401 patients in this dataset. CLUSTER has brought together data from 4 UK observational JIA research cohort studies: the UK JIA Biologics Register, the Childhood Arthritis Prospective Study (CAPS) and the Childhood Arthritis Response to Medication Study (CHARMS). Clinical data from these studies was pooled to create the CLUSTER anti-TNF clinical dataset. More details of CLUSTER's clinical data harmonisation process are available here: <link> We are open to collaborating and sharing data with researchers who have research questions that may be answered by our data. Access to CLUSTER data is regulated according to the conditions of patient consent, study ethics and the CLUSTER Consortium’s policies. Access is available to researchers via an application to the CLUSTER data access committee - more details are available on CLUSTER's website.

本数据字典用于说明CLUSTER抗TNF临床数据集。该数据集包含用于评估幼年特发性关节炎（juvenile idiopathic arthritis, JIA）患者对肿瘤坏死因子抑制剂（anti-TNF）治疗应答的核心关注变量，采集时间分为两个阶段：基线/时间点1（抗TNF治疗启动时或治疗前3个月内），以及时间点2（基线后6个月，允许3~12个月的时间窗）。若患者在单个时间窗内存在多次就诊记录，则选取最接近基线或6个月时间点的那次就诊数据。本数据集共纳入2401例患者。CLUSTER整合了4项英国观察性JIA研究队列的数据：英国JIA生物制剂登记库、儿童关节炎前瞻性研究（Childhood Arthritis Prospective Study, CAPS）以及儿童关节炎药物应答研究（Childhood Arthritis Response to Medication Study, CHARMS）。研究人员将上述队列的临床数据进行合并整合，构建得到CLUSTER抗TNF临床数据集。有关CLUSTER临床数据标准化协调流程的更多详情，请访问：<link>。我们欢迎具备相关研究需求的研究者与本团队开展合作并共享数据。CLUSTER数据集的获取需遵循患者知情同意、研究伦理规范以及CLUSTER联盟的相关政策要求。研究者需向CLUSTER数据访问委员会提交申请以获得数据集访问权限，更多详情可查阅CLUSTER官方网站。