[多发性硬化症真实世界数据的核心数据集:来自全球工作组建议的拉丁美洲定制]
Revista de neurologia
|March 19, 2024
概括
对多发性硬化症 (MS) 的统一核心数据集适用于拉丁美洲,改善了现实世界的数据收集和跨区域注册表和队列的协作.
科学领域:
- 神经学 神经学
- 流行病学 流行病学
- 数据科学数据科学数据科学
背景情况:
- 协调现实世界数据 (RWD) 对于减少多发性硬化症 (MS) 研究中的异质性至关重要.
- 多发性硬化症数据联盟的全球核心数据集旨在标准化RWD收集.
- 适应拉丁美洲的全球数据集对于区域适用性至关重要.
研究的目的:
- 为拉丁美洲的注册和队列适应全球MS核心数据集.
- 为了促进该地区实施标准化的RWD收集.
- 促进拉丁美洲各成员国数据来源的协调和减少异质性.
主要方法:
- 一个区域工作组调整了全球核心数据集.
- 调整涉及向西班牙语翻译,纳入区域变量,并达成共识.
- 远程Delphi方法,包括问卷和讨论,用于最终确定变量选择.
主要成果:
- 适应过程涉及25名拉丁美洲专业人士从2022年11月到2023年7月.
- 在一个包含9个类别和45个变量 (2023年版本) 的核心数据集上达成共识.
- 最终完成的数据集建议在拉丁美洲的现有和正在开发的MS注册表和队列中实施.
结论:
- 调整的核心数据集旨在协调拉丁美洲的MS注册表和队列收集的变量.
- 实施将简化RWD收集,促进该地区数据源之间的协作.
- 该倡议支持拉丁美洲对多发性硬化症的研究和临床洞察力.
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