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论文1:欧洲先天性异常监测系统网络——组织与流程

Paper 1: The EUROCAT network--organization and processes.

作者信息

Boyd Patricia A, Haeusler Martin, Barisic Ingeborg, Loane Maria, Garne Ester, Dolk Helen

机构信息

National Perinatal Epidemiology Unit, University of Oxford, Oxford, United Kingdom.

出版信息

Birth Defects Res A Clin Mol Teratol. 2011 Mar;91 Suppl 1:S2-15. doi: 10.1002/bdra.20780. Epub 2011 Mar 7.

Abstract

The European Surveillance of Congenital Anomalies (EUROCAT) is a network of population-based congenital anomaly registries in Europe, funded by the European Union, which has been in operation for more than 30 years. It currently surveys more than 1.7 million births per year, including 31% of births in the European Union, and includes almost all population-based European congenital anomaly registries as its members. EUROCAT member registries collect data, ascertained from multiple sources, on all major structural congenital and chromosomal anomalies. EUROCAT surveillance relates to three areas: prevalence, primary prevention, and prenatal screening. This article describes the history of EUROCAT and gives an overview of the current methodology and work of EUROCAT covering the database content and management, coding and classification of anomalies, core surveillance, prevalence tables, statistical monitoring. The monitoring of new developments in prenatal diagnosis, medication during pregnancy, use of folic acid, and investigation of clusters and exposures are overseen by working groups responsible for organizing research and producing regular reports. The EUROCAT Web site includes current data on prevalence rates and prenatal detection rates-an example of information useful to clinicians, public health service managers, and patients.

摘要

欧洲先天性异常监测系统(EUROCAT)是一个由欧盟资助的欧洲基于人群的先天性异常登记网络,已经运行了30多年。它目前每年调查超过170万例出生情况,占欧盟出生人数的31%,几乎涵盖了所有欧洲基于人群的先天性异常登记机构作为其成员。EUROCAT成员登记机构从多个来源收集有关所有主要结构性先天性和染色体异常的数据。EUROCAT监测涉及三个领域:患病率、一级预防和产前筛查。本文介绍了EUROCAT的历史,并概述了其当前的方法和工作,包括数据库内容和管理、异常的编码和分类、核心监测、患病率表、统计监测。产前诊断的新进展、孕期用药、叶酸使用以及聚集性和暴露调查的监测由负责组织研究和定期报告的工作组进行监督。EUROCAT网站包括患病率和产前检测率的当前数据——这是对临床医生、公共卫生服务管理人员和患者有用的信息示例。

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