骨肿瘤专病数据库的构建与应用  

Construction and application of a bone tumor database

作　　者：曾柯 吕毓 汪红胜 孙梦熊[1] 左冬青 王崇任 马小军[1] 沈嘉康[1] 昝鹏飞 王卓莹 孙伟[1] 华莹奇[1] 蔡郑东[1] Zeng Ke;Lyu Yu;Wang Hongsheng;Sun Mengxiong;Zuo Dongqing;Wang Chongren;Ma Xiaojun;Shen Jiakang;Zan Pengfei;Wang Zhuoying;Sun Wei;Hua Yingqi;Cai Zhengdong(Department of Bone Tumor,Shanghai General Hospital,Shanghai 200080,China)

机构地区：[1]上海市第一人民医院骨肿瘤科,上海200080

出　　处：《中华骨科杂志》2023年第12期821-830,共10页Chinese Journal of Orthopaedics

基　　金：上海申康医院发展中心特色专病队列数据库建设项目(SHDC2020CR6006)。

摘　　要：目的探讨多中心骨肿瘤专病数据库的构建与应用方法。方法经由上海市第一人民医院、海军军医大学第二附属医院、复旦大学附属中山医院、上海市第六人民医院、上海交通大学医学院附属瑞金医院、复旦大学附属肿瘤医院和上海交通大学医学院附属第九人民医院组成的多中心专家团队研究讨论,建立骨肿瘤标准数据集。按标准字段自动采集临床数据并标准化处理。搭建数据库并开发用户界面,在保障数据安全存储的同时,提供原始数据导出,统计分析可视化和临床队列研究项目建立与研究等服务。通过与申康大数据平台对接,完成骨肿瘤数据库的共享工作,实现多中心数据对接。结果建立了包含603个字段的骨肿瘤标准数据集并出版、建立了骨肿瘤数据自动采集系统,包括完整的数据收集、数据整理及可视化功能。数据类别包括患者的电子病案信息,实验室血常规、生化、肿瘤标志物等信息,影像学信息,手术信息,病理信息及放化疗记录等模块。患者的姓名、身份证号等个人信息经脱敏加密后,可导出供进一步研究使用。自2015至2023年,数据库采集的骨肿瘤病例总数为10789例;2015年至2019年,回顾性分析收治的骨肉瘤队列112例,并绘制了患者的五年生存曲线,五年生存率为68%。结论通过建立区域级的骨肿瘤专病大数据网络和数据共享平台,及建立数据共享机制和标准,包括数据标准、安全标准、质量评价标准等,可为我国骨肿瘤数据库的建设提供参考及高效的新方案,为骨肿瘤规范化诊疗及新技术提供研发平台。Objective To explore the construction and application methods of multicenter bone tumor-specific database.Methods Experts from multiple centers including Shanghai General Hospital,Shanghai Changzheng Hospital,Zhongshan Hospital,Shanghai Sixth People's Hospital,Ruijin Hospital,Fudan University Shanghai Cancer Center and Shanghai Ninth People's Hospital established a standard dataset for bone tumors through research and discussion.Clinical data will be automatically collected and standardized according to standard fields.A database will be built and a users'interface will be developed to ensure secure data storage,while providing services such as exporting raw data,visualizing statistical analysis,establishing clinical queue research projects,et al.Finally,the bone tumor database will be shared by integrating with the Shenkang's Big Data Platform to achieve multi-center data integration.Results A standard data set for bone tumors containing 603 fields has been established and published.An automated data collection system for bone tumors has been established,including complete data collection,data collation and visualization functions.The data categories include modules such as patients'electronic case information,laboratory information on blood routine,biochemistry and tumor markers,imaging information,surgery information,pathology information and radiotherapy records.Personal information such as patients'names and ID numbers are desensitized and encrypted and can be exported for further research.From 2015 to 2023,the total number of bone tumor cases collected in the database was 10,789.From 2015 to 2019,112 cases of the osteosarcoma cohort were retrospectively analyzed for admission,with a statistical 5-year survival rate of 68%.Conclusion A regional bone tumor specialty big data network and data sharing platform has been established,along with data sharing mechanisms and standards including data standards,security standards,and quality evaluation standards.This provides data and efficient new solutions for the co

关 键 词：骨肿瘤 数据库 多中心研究 

分 类 号：TP311.13[自动化与计算机技术—计算机软件与理论] R738.1[自动化与计算机技术—计算机科学与技术]