COVID-19 in people with multiple sclerosis: A global data sharing initiative
COVID-19 in people with multiple sclerosis: A global data sharing initiative
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DOI：
10.1177/1352458520941485
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发表时间：
2020-07-14
影响因子：
5.8
通讯作者：
Rijke, Nick
中科院分区：
文献类型：
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作者：
Peeters, Liesbet M.;Parciak, Tina;Rijke, Nick
背景：我们需要高质量的数据来评估多发性硬化症患者新冠肺炎严重程度的决定因素。最近出现了几项研究，但在全球范围内协调数据收集工作会带来很大好处。目标：我们的使命是扩大新冠肺炎的数据收集工作，并尽快为MS社区提供数据驱动的洞察。方法：将众多利益相关者聚集在一起。成立了专职的跨学科小型工作队，以加快研究设计和工作计划的制定。第一步是就新冠肺炎微软核心数据集达成一致。第二，我们致力于为全球范围内的新冠肺炎数据共享提供一个方便快捷的管道。结果：在48小时内达成了新冠肺炎MS核心数据集。到目前为止，已有23个数据收集伙伴参与，第一批数据导入工作已经成功完成。数据处理和分析是一个持续的过程。结论：我们就核心数据集达成了共识，并与多个合作伙伴建立了数据共享流程，以解决指导临床实践的迫切信息需求。第一，研究结果表明，合作伙伴有分享数据的动机，以达到共同的最终目标：更好地理解新冠肺炎在项目管理体系中的作用。
Background: We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale.Objectives: Our mission is to scale-up COVID-19 data collection efforts and provide the MS community with data-driven insights as soon as possible.Methods: Numerous stakeholders were brought together. Small dedicated interdisciplinary task forces were created to speed-up the formulation of the study design and work plan. First step was to agree upon a COVID-19 MS core data set. Second, we worked on providing a user-friendly and rapid pipeline to share COVID-19 data at a global scale.Results: The COVID-19 MS core data set was agreed within 48 hours. To date, 23 data collection partners are involved and the first data imports have been performed successfully. Data processing and analysis is an on-going process.Conclusions: We reached a consensus on a core data set and established data sharing processes with multiple partners to address an urgent need for information to guide clinical practice. First results show that partners are motivated to share data to attain the ultimate joint goal: better understand the effect of COVID-19 in PwMS.