基于国家儿童肿瘤监测平台的肿瘤患儿同胞信息库构建与实践  

Construction and practice of cancer patient sibling information database based on the national pediatric cancer surveillance platform

作　　者：刘莹颖 李哲 邓卓 毛华伟 李新平 张啸 白国良 杨卓煜 倪鑫[1] Liu Yingying;Li Zhe;Deng Zhuo;Mao Huawei;Li Xinping;Zhang Xiao;Bai Guoliang;Yang Zhuoyu;Ni Xin(National Center for Pediatric Cancer Surveillance,Beijing Children′s Hospital,Capital Medical University,National Center for Children′s Health,Beijing 100045,China;Information Center,Beijing Children′s Hospital,Capital Medical University,National Center for Children′s Health,Beijing 100045,China;Department of Immunology,Beijing Children′s Hospital,Capital Medical University,National Center for Children′s Health,Beijing 100045,China)

机构地区：[1]国家儿童医学中心、首都医科大学附属北京儿童医院国家儿童肿瘤监测中心,北京100045 [2]国家儿童医学中心、首都医科大学附属北京儿童医院信息中心,北京100045 [3]国家儿童医学中心、首都医科大学附属北京儿童医院免疫科,北京100045

出　　处：《中华医院管理杂志》2024年第12期933-936,共4页Chinese Journal of Hospital Administration

基　　金：首都医科大学附属北京儿童医院研究平台专项课题(YPT202001);首都医科大学附属北京儿童医院管理课题(YGLQ2022002)。

摘　　要：建立覆盖全国范围的儿童肿瘤同胞信息库,对开展儿童肿瘤相关研究具有重要意义。2022年10月,国家儿童肿瘤监测中心基于国家儿童肿瘤监测平台,利用患者主索引识别与整合儿童肿瘤病例信息,通过同胞对匹配算法系统,判定与捞取肿瘤患儿同胞的诊疗信息,建立了肿瘤患儿同胞信息库,并将该信息库存储于监测平台的同胞库模块,实现了肿瘤患儿同胞信息的动态更新、调取、下载与分析等,为深入开展肿瘤同胞研究提供数据与技术支持,也为其他疾病监测体系研究型数据库的建设提供参考。截至2024年3月,该信息库已纳入2980例肿瘤患者,收集相关病例信息近3万条。未来,监测中心应进一步提高同胞对判定逻辑的灵敏度,拓展同胞信息库的功能,使儿童肿瘤同胞信息库更好地满足临床和科研工作的多样化需求。Building a nationwide representative sibling information database of pediatric cancer is of great significance for the research of pediatric cancer.In October 2022,based on the national pediatric cancer surveillance platform,the National Center for Pediatric Cancer Surveillance(NCPCS)identified and integrated the information of pediatric cancer cases using the patient master index,and then determined and retrieved the diagnosis and treatment information of pediatric cancer siblings through the sibling pair matching algorithm system,to establish the sibling information database.The information database was stored in the sibling database module of the surveillance platform,which realized the dynamic update,retrieval,download,and analysis of sibling information.The database provided data and technical support for the further childhood cancer research among siblings,as well as provided a reference for the construction of research-oriented databases for other disease surveillance systems.As of March 2024,this database had included 2980 childhood cancer patients,collecting nearly 30000 related medical records.In the future,NCPCS should further improve the sensitivity of sibling decision logic and expand the functionality of the sibling information database,so as to better meet the diverse needs of clinical and scientific research.

关 键 词：儿童肿瘤监测 同胞 信息库 判定规则 研究型数据库 

分 类 号：R73-31[医药卫生—肿瘤]