Data harmonization for collaborative research among MS registries: A case study in employment
Data harmonization for collaborative research among MS registries: A case study in employment
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DOI：
10.1177/1352458520910499
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发表时间：
2020-03-12
影响因子：
5.8
通讯作者：
Marrie, R. A.
中科院分区：
文献类型：
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作者：
Salter, A.;Stahmann, A.;Marrie, R. A.
目的：通过调查多发性硬化症(MS)患者的就业情况，评估3个MS注册中心协作和回溯性数据协调的可行性。方法：我们使用MAESTROM指南来促进3个MS注册中心数据的回溯性协调，包括NARCOMS(北美多发性硬化症研究委员会)注册中心、德国MS注册中心(GMSR)和英国MS(UK-MS)注册中心。在指导方针的基础上制定了一项协议，并使用摘要级别的数据来合并结果。协调了就业状况和与就业相关的一组有限因素(年龄、性别、教育程度和残疾程度)。在随机效应模型中，使用Logistic回归估计及其方差的加权平均，使用荟萃分析方法来汇集估计。结果：绘制了就业状况、年龄、性别、教育程度和残疾的地图。总体就业率为57%(在19,562名多发性硬化症患者中有11,143人就业)，其中GMSR的受雇比例最高(66.2%)，其次是英国-多发性硬化症(55.2%)和NARCOMS(43.0%)。随着残疾程度的增加，失业的几率也增加。结论：跨登记的协调是可行的。大漩涡准则为开展高质量的协调项目提供了宝贵的路线图。汇集数据来源有可能成为开展多发性硬化症研究的重要机制。
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.