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对英格兰和威尔士国家先天性异常系统的评估。

Evaluation of the National Congenital Anomaly System in England and Wales.

作者信息

Misra T, Dattani N, Majeed A

机构信息

Department of Primary Care and Social Medicine, 3rd Floor, Reynolds Building, Imperial College-Charing Cross Campus, London W6 8RP, UK.

出版信息

Arch Dis Child Fetal Neonatal Ed. 2005 Sep;90(5):F368-73. doi: 10.1136/adc.2004.052936.

DOI:10.1136/adc.2004.052936
PMID:16113152
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1721934/
Abstract

OBJECTIVE

To evaluate the National Congenital Anomaly System (NCAS).

METHODS

The NCAS in England and Wales based at the Office for National Statistics and the various regional registers that exchange data with it were examined, based on guidelines for evaluating public health surveillance systems, published by the Centres for Disease Control (CDC). Data relating to congenital anomaly notifications received from 1991 to 2002 were analysed.

MAIN OUTCOME MEASURES

The main outcome measures were based on CDC standards and included the level of usefulness of the system, simplicity, flexibility, data quality, acceptability, sensitivity, representativeness, timeliness, and stability of the system.

RESULTS

The NCAS has two main tiers: the "passive" system of voluntary notifications and the anomaly registers, but many reporting sources within these. It receives about 7000 notifications a year. It is inflexible and has variable data quality. The voluntary nature of reporting affects the system's acceptability. The sensitivity as compared with two regional registers (Trent and Wales) is about 33%. The congenital anomaly registers reporting to the NCAS achieve high levels of coverage and completeness. From 2003, they cover 42% of all births and account for the major proportion of the notifications.

CONCLUSIONS

The NCAS serves the important function of monitoring birth defects in England and Wales, but is not currently operating in a timely or effective way. It should be adapted to meet its main objectives more effectively. More regional anomaly registers should be instituted and existing registers supported through central funds.

摘要

目的

评估国家先天性异常系统(NCAS)。

方法

根据美国疾病控制中心(CDC)发布的公共卫生监测系统评估指南,对位于英国国家统计局的英格兰和威尔士NCAS以及与其交换数据的各个区域登记处进行了检查。分析了1991年至2002年收到的与先天性异常通报相关的数据。

主要结局指标

主要结局指标基于CDC标准,包括系统的有用性水平、简易性、灵活性、数据质量、可接受性、敏感性、代表性、及时性和系统稳定性。

结果

NCAS有两个主要层级:自愿通报的“被动”系统和异常登记处,但其中有许多报告来源。它每年收到约7000份通报。它缺乏灵活性,数据质量参差不齐。报告的自愿性质影响了系统的可接受性。与两个区域登记处(特伦特和威尔士)相比,其敏感性约为33%。向NCAS报告的先天性异常登记处实现了高水平的覆盖和完整性。从(2003)年起,它们覆盖了所有出生人口的(42%),并占通报的主要比例。

结论

NCAS在英格兰和威尔士发挥着监测出生缺陷的重要作用,但目前运行不及时、效率不高。应进行调整,以更有效地实现其主要目标。应设立更多的区域异常登记处,并通过中央资金支持现有登记处。

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本文引用的文献

1
Congenital anomaly surveillance in England--ascertainment deficiencies in the national system.英格兰的先天性异常监测——国家系统中的确诊缺陷
BMJ. 2005 Jan 1;330(7481):27. doi: 10.1136/bmj.38300.665301.3A. Epub 2004 Nov 23.
2
Evaluation of a national surveillance unit.一个国家监测单位的评估。
Arch Dis Child. 1999 Jan;80(1):21-7. doi: 10.1136/adc.80.1.21.