Construction and practice of cancer patient sibling information database based on the national pediatric cancer surveillance platform
10.3760/cma.j.cn111325-20240529-00443
- VernacularTitle: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
- Author:
Yingying LIU
1
;
Zhe LI
;
Zhuo DENG
;
Huawei MAO
;
Xinping LI
;
Xiao ZHANG
;
Guoliang BAI
;
Zhuoyu YANG
;
Xin NI
Author Information
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
- Publication Type:Journal Article
- Keywords:
Pediatric cancer surveillance;
Siblings;
Information database;
Decision rules;
Research-oriented database
- From:
Chinese Journal of Hospital Administration
2024;40(12):933-936
- CountryChina
- Language:Chinese
-
Abstract:
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 2 980 childhood cancer patients, collecting nearly 30 000 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.
