从风湿病学卓越网络生成现实世界的证据
Timothy Beukelman1, Amy Mudano2, Patrick Stewart2
1Foundation for Advancing Science, Technology, Education, and Research (FASTER), Birmingham, Alabama, USA.
Pharmacoepidemiology and drug safety
|December 11, 2024
概括
风湿病学卓越网络 (ENRGY) 是一个基于实践的研究网络 (PBRN),使用汇总的电子健康记录和患者生成的数据. 这种基础设施有助于高效的多中心研究在类风湿病及其他领域.
科学领域:
- 类风湿病学 类风湿病学
- 医疗信息学 医疗信息学
- 临床研究 临床研究
背景情况:
- 风湿病学卓越网络 (ENRGY) 于2021年成立.
- 它包括全美700多家私人诊所的风湿病提供者.
- 能源作为一个基于实践的研究网络 (PBRN).
研究的目的:
- 汇总和分析来自不同类型的风湿病学实践的电子健康记录 (EHR) 数据.
- 提高多中心前性研究的效率和质量.
- 为了在网络内利用技术服务改善患者护理.
主要方法:
- 从多个平台汇总结构化和非结构化EHR数据.
- 实施数据质量措施,以确保高质量的临床数据采集.
- 使用链接的行政索赔和患者生成的健康数据 (智能手机应用程序,生物传感器).
主要成果:
- 能源的数据仓库集成了电子健康记录,索赔和患者生成的健康数据.
- 该基础设施支持地点识别,患者招募和研究进行.
- 集中式数据管理和参与者联系简化了研究过程.
结论:
- 能源数据和基础设施促进了高效的前性研究.
- 该网络作为建立PBRNs的其他专业的典范.
- 它展示了数据链接和患者生成数据在研究中的潜力.
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