Objective: To assess the feasibility of collaboration and retrospective data harmonization among three multiple sclerosis (MS) registries by investigating employment status. Methods: We used the Maelstrom guidelines to facilitate retrospective harmonization of data from three MS registries, including the NARCOMS (North American Research Committee on MS) Registry, German MS Register (GMSR), and United Kingdom MS (UK-MS) Register. A protocol was developed based on the guidelines, and summary-level data were used to combine results. Employment status and a limited set of factors associated with employment (age, sex, education, and disability level) were harmonized. A meta-analytic approach was used to pool estimates using a weighted average of logistic regression estimates and their variances in a random effects model. Results: Employment status, age, sex, education, and disability were mapped. The overall employment rate was 57% (11,143 employed out of 19,562 persons with MS) with the GMSR having the highest proportion of participants employed (66.2%), followed by the UK-MS (55.2%) and NARCOMS (43.0%) registries. As disability level increased, the odds of not being employed increased. Conclusion: Harmonization across registries was feasible. The Maelstrom guidelines provide a valuable roadmap for conducting high-quality harmonization projects. The pooling of data sources has the potential to be an important mechanism for conducting research in MS.

中文翻译：

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MS 注册机构间合作研究的数据协调：就业案例研究

目标：通过调查就业状况，评估三个多发性硬化症 (MS) 登记处之间协作和回顾性数据协调的可行性。方法：我们使用 Maelstrom 指南来促进来自三个 MS 登记处的数据的回顾性协调，包括 NARCOMS（北美 MS 研究委员会）登记处、德国 MS 登记处 (GMSR) 和英国 MS (UK-MS) 登记处。根据指南制定了一个协议，并使用汇总级数据来组合结果。就业状况和与就业相关的一组有限因素（年龄、性别、教育和残疾水平）得到协调。使用元分析方法，使用逻辑回归估计的加权平均值及其在随机效应模型中的方差来合并估计。结果：就业状况、年龄、性、教育和残疾被绘制出来。总体就业率为 57%（19,562 名 MS 患者中有 11,143 人就业），其中 GMSR 的就业比例最高（66.2%），其次是 UK-MS（55.2%）和 NARCOMS（43.0%）登记处。随着残疾程度的增加，失业的几率增加。结论：跨注册管理机构的协调是可行的。Maelstrom 指南为开展高质量的协调项目提供了宝贵的路线图。数据源的汇集有可能成为开展 MS 研究的重要机制。2%) 和 NARCOMS (43.0%) 登记处。随着残疾程度的增加，失业的几率增加。结论：跨注册管理机构的协调是可行的。Maelstrom 指南为开展高质量的协调项目提供了宝贵的路线图。数据源的汇集有可能成为开展 MS 研究的重要机制。2%) 和 NARCOMS (43.0%) 登记处。随着残疾程度的增加，失业的几率增加。结论：跨注册管理机构的协调是可行的。Maelstrom 指南为开展高质量的协调项目提供了宝贵的路线图。数据源的汇集有可能成为开展 MS 研究的重要机制。