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European Monitoring of Congenital Anomalies: JRC-EUROCAT Report on Statistical Monitoring of Congenital Anomalies (2006 – 2015)

Abstract

Worldwide, congenital anomalies are a leading cause of fetal death, infant mortality and morbidity in childhood. Of the 5.2 million births in the European Union (EU) each year, approximately 104,000 (2.5%) will be born with congenital anomalies. EUROCAT is a European network of population-based registries whose objectives are to provide essential epidemiologic information on congenital anomalies in Europe, to facilitate the early warning of new teratogenic exposures and to evaluate the effectiveness of primary prevention. Each year, EUROCAT performs statistical monitoring for both trends and clusters in time on 82 anomaly subgroups. Statistical monitoring relates to two of EUROCAT’s objectives: to provide essential epidemiologic information on congenital anomalies in Europe and to co-ordinate the detection of, and response to, clusters and early warning of teratogenic exposures. The results of the statistical monitoring are the basis for possible further investigations at the local registry level. In 2015 the Central Registry of EUROCAT was transferred from the University of Ulster to the JRC, and became part of the European Platform on Rare Diseases Registration. This is the first time the statistical monitoring has been performed by the JRC-EUROCAT Central registry. We report here the results of the monitoring performed on data for the birth years 2006-2015. Cases of congenital anomaly among livebirths, fetal deaths from 20 weeks gestational age and terminations of pregnancy for fetal anomaly (TOPFA) at any gestation were included. We report both the statistical results and, where available, the outcome of preliminary investigations conducted by registries. For each anomaly, the trends in prevalence in each registry are shown and in addition the overall pan-European prevalence by single year of birth. Some congenital anomalies take a while to be reported; therefore the prevalence in the latest data is often underreported. Presenting the overall pan-European prevalence by single year allows for the influence of the most recent data (2015) to be evaluated.JRC.F.1-Health in Societ

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