德国国家队列组织模式及其启示

Organization moclel of the German national cohort and its enlightenments

目的:促进我国人群队列数据的有效管理,为我国队列的数据管理模式提供有益参考和借鉴。方法:介绍具有国际影响力的德国国家队列计划,从组织模式、数据类型及数据管理3个维度进行分析和总结,概述其研究目的和主要规划,探究数据采集和处理、整合和存储、分析和使用及质量保护与控制。结果:通过多源数据分类管理,禁止在数据使用过程中直接向受试者申请数据和数据使用结果的共享。结论:针对我国队列研究现有的不足,结合德国国家队列的启示,我国应统一数据标准,实行多源分类存储;使用辅助数据,丰富数据的广度和深度;明确受试者权益、规范共享流程,以促进我国卫生健康事业的可持续性发展。

Objective To promote the effective management of population cohort data and to provide the beneficial reference for the cohort data management model in our country. Methods After a description of the German national cohort program with an international impact,its organizational model,data types and data management were summarized and analyzed,its research target and plan were outlined,its data collection and processing,integration and storage,quality protection and control were studied. Results Multisource data classification management prohibited the application for data and sharing of data use in tested subjects when they were using the data. Conclusion Data standards should be unified,multisource data classification storage should be implemented,the data analysis should be widened and deepened,the right of tested subjects should be made clear,and the data sharing procedure should be standardized in our country according to the inadequate domestic cohort research and the enlightenments of the German national cohort.