Lechat M F, Dolk H
Department of Epidemiology and Preventive Medicine, Catholic University of Louvain, Brussels, Belgium.
Environ Health Perspect. 1993 Jul;101 Suppl 2(Suppl 2):153-7. doi: 10.1289/ehp.93101s2153.
Congenital anomalies are one of the potential adverse effects of the environment on reproductive health. Registries of congenital anomalies are useful to detect abnormal frequencies, clusters, and trends. Such registries should meet a number of conditions, including an appropriate population denominator, an efficient system for collecting information, standardized diagnostic procedures, postmortem examinations of still-births, and linkage of records. The EUROCAT (European Registration of Congenital Anomalies and Twins) program is a Concerted Action of the Commission of the European Communities initiated in 1979. One of its objectives is the surveillance of congenital anomalies as related to environmental hazards. This surveillance system covers at present 350,000 births per year in 15 countries. A number of problems encountered in the development of EUROCAT and in the course of ongoing activities are reviewed: populations coverage, classification of malformations, coding, definition and coverage of late fetal death, registration of induced abortion, validation of diagnostic information, registration of late diagnosed cases, and maintenance of motivation in data collection. The issue of confidentiality and the need for strict safeguards for the protection of individual privacy are emphasized.
先天性异常是环境对生殖健康的潜在不良影响之一。先天性异常登记册有助于发现异常频率、聚集情况和趋势。此类登记册应满足若干条件，包括合适的人口分母、有效的信息收集系统、标准化的诊断程序、死产儿的尸检以及记录的关联。欧洲先天性异常和双胞胎登记系统（EUROCAT）项目是欧洲共同体委员会于1979年发起的一项联合行动。其目标之一是监测与环境危害相关的先天性异常。目前，这个监测系统覆盖15个国家每年35万例出生情况。本文回顾了EUROCAT项目发展过程中及日常活动中遇到的一些问题：人群覆盖范围、畸形分类、编码、晚期胎儿死亡的定义和覆盖范围、人工流产登记、诊断信息验证、晚期诊断病例登记以及数据收集的积极性维持。文中强调了保密问题以及严格保护个人隐私的必要性。
