儿童先天性心脏病登记现状及对策  

Current situation and strategies of congenital heart disease registry

作　　者：包文婕 王伟[1] 张云婷[1] 洪海筏 杜欣为[1] 江忠仪[1] BAO Wen-jie WANG Wei ZHANG Yun-ting HONG Hai-fa DU Xin-wei JIANG Zhong-yi(Shanghai Children＇s Medical Center, Shanghai 200127, China ）.)

机构地区：[1]上海交通大学医学院附属上海儿童医学中心,上海200127

出　　处：《中国卫生资源》2017年第2期182-186,共5页Chinese Health Resources

基　　金：上海市卫生计生委联合攻关项目"上海市小儿先心病;儿童血液肿瘤登记信息共享平台的建立"(2013ZYJB0013);上海市公共卫生三年行动计划"儿童重大疾病数据合作应用中心的建立及应用"(GWIV-25)

摘　　要：先天性心脏病是严重危害我国儿童身心健康的公共卫生问题之一,建立完善的随访、追踪和疾病登记管理系统显得尤为重要。然而,目前我国尚无此类疾病登记系统。文章通过对国内儿童专病登记的现状进行分析,从登记管理体系、信息共享机制和协调管理机制宏观层面存在的问题进行剖析,指出目前儿童专病登记中登记时效性、内容、人员、质量等方面存在的不足。同时,借鉴国内外经验,提出目前在体制完善、统一规范、信息共享、质量监控和资金支持上的工作重点及未来建立我国儿童先天性心脏病专病登记系统的新思路和新对策。Congenital heart disease （ CHD ） is one of the public health problems that seriously endanger the physical and mental health of children in China. It is particularly important to establish and perfect the management system of follow-up, tracking and disease registry. However, there is no such a registry system designed only for pediatric diseases in China. The article analyzed the current situation of domestic children＇s special disease registration. On the macro level, there were problems in registry management system, data sharing mechanism, and coordination mechanism; on the micro level, deficiencies in timeliness, content, personnel, quality of current registry were pointed out. With domestic and overseas experience, the article put forward focuses on system perfecting, standard unifying, data sharing, quality monitoring, and financial supporting, as well as new ideas and strategies for the establishment of the registration system for children with CHD in China.

关 键 词：先天性心脏病 疾病登记系统 儿童 

分 类 号：R19[医药卫生—卫生事业管理] R541.1[医药卫生—公共卫生与预防医学]