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国外科学数据管理与共享政策及对我国精准医学数据管理的启示
引用本文:孙小康,吴思竹,修晓蕾,崔佳伟,钱庆.国外科学数据管理与共享政策及对我国精准医学数据管理的启示[J].医学信息学杂志,2018,39(4):54-61.
作者姓名:孙小康  吴思竹  修晓蕾  崔佳伟  钱庆
作者单位:中国医学科学院/北京协和医学院医学信息研究所 北京 100020,中国医学科学院/北京协和医学院医学信息研究所 北京 100020,中国医学科学院/北京协和医学院医学信息研究所 北京 100020,中国医学科学院/北京协和医学院医学信息研究所 北京 100020,中国医学科学院/北京协和医学院医学信息研究所 北京 100020
基金项目:国家重点研发计划精准医学研究重点专项“重大疾病精准医学数据库群”课题(项目编号:2016YFC0901602);北京协和医学院协和青年基金“面向精准医学的数据汇交与共享政策研究”(项目编号:2017330018)。
摘    要:选取美、英两国生物医学科研资助机构的部分数据管理与共享政策,对其基本特征及政策概况、数据汇交、数据保存与管理、数据共享以及数据安全与保护5大类、25个具体指标进行详细对比分析,结合我国精准医学专项基本情况,获得政策制定方面的启示,以期为我国精准医学专项数据政策制定提供参考。

关 键 词:科学数据  数据管理  数据共享  数据政策  精准医学
收稿时间:2018/1/8 0:00:00

Overseas Scientific Data Management and Sharing Policies and Its Enlightenment to Precision Medical Data Management in China
SUN Xiao-kang,WU Si-zhu,XIU Xiao-lei,CUI Jia-wei and QIAN Qing.Overseas Scientific Data Management and Sharing Policies and Its Enlightenment to Precision Medical Data Management in China[J].Journal of Medical Informatics,2018,39(4):54-61.
Authors:SUN Xiao-kang  WU Si-zhu  XIU Xiao-lei  CUI Jia-wei and QIAN Qing
Institution:Institute of Medical Information, Chinese Academy of Medical Sciences/Peking Union Medical College, Beijing 100020, China,Institute of Medical Information, Chinese Academy of Medical Sciences/Peking Union Medical College, Beijing 100020, China,Institute of Medical Information, Chinese Academy of Medical Sciences/Peking Union Medical College, Beijing 100020, China,Institute of Medical Information, Chinese Academy of Medical Sciences/Peking Union Medical College, Beijing 100020, China and Institute of Medical Information, Chinese Academy of Medical Sciences/Peking Union Medical College, Beijing 100020, China
Abstract:Selecting some data management and sharing policies from biomedical scientific study funding agencies in both USA and Britain, the paper carries out detailed comparative analysis of its basic characteristics and the 25 specific indexes of the 5 categories, including policy overview, intersection point of data, data storage and management, data sharing and data security and protection. Combining with the specific fundamental situation of precision medicine in China, it gains enlightenment in policy making to provide references for the formulation of specific data policy of precision medicine in China.
Keywords:Scientific data  Data management  Data sharing  Data policy  Precision medicine
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