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European Surveillance of Congenital Anomalies

European Surveillance of Congenital Anomalies. WHO Collaborating Centre for the Epidemiological Surveillance of Congenital Anomalies Supported by the EU-Commission Public Health Directorate Programme of Community Action on Rare Diseases. What is EUROCAT?.

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European Surveillance of Congenital Anomalies

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  1. European Surveillance of Congenital Anomalies WHO Collaborating Centre for the Epidemiological Surveillance of Congenital Anomalies Supported by the EU-Commission Public Health Directorate Programme of Community Action on Rare Diseases

  2. Whatis EUROCAT? • European network of population-based registries for the epidemiologic surveillance of congenital anomalies. • Started in 1979 • More than 1 million births surveyed per year in Europe • 37 registries in 18 countries of Europe • Standardised database on >250,000 cases of congenital anomaly among livebirths, stillbirths and terminations of pregnancy since 1980

  3. Map of Registries

  4. Public Health Importance • 2% + births • 20% stillbirths and infant deaths • Childhood morbidity and lifelong disability

  5. Objectives of EUROCAT • To provide essential epidemiologic information on congenital anomalies in Europe • To facilitate the early warning of teratogenic exposures • To evaluate the effectiveness of primary prevention • To assess the impact of developments in prenatal screening • To act as an information and resource centre for the population and health professionals regarding clusters or exposures or risk factors of concern • To provide a ready collaborative network and infrastructure for research related to the causes and prevention of congenital anomalies and the treatment and care of affected children • To act as a catalyst for the setting up of registries throughout Europe collecting comparable, standardised data

  6. EUROCAT Working Groups and Committees • Drugs • Prenatal Diagnosis • Coding and Classification (incl monitoring of multiple malformations) • Ethics and confidentiality • Periconceptional folic acid and NTD • Assisted conception • Revision of EUROCAT Guide 1.3 • Clusters and statistical surveillance

  7. New innovations for EDMP • Statistical monitoring: trend test and scan test • Calculates prevalence rates and produces standard tables • Binary anomaly subgroups drawing on ICD9 and ICD10 codes

  8. EUROCAT Guide 1.3 revision • Improved drug (ATC) coding • Updated coding of prenatal screening/diagnosis • Coding of sociodemographic variables • Data Quality Indicators

  9. Primary Prevention • Survey of policy and practice in relation to periconceptional folic acid supplementation and fortification in 18 European countries • Analysis of neural tube defect prevalence up to 2000 • EUROCAT Special Report May 2003 • To be updated yearly • Available on website: www.eurocat.ulster.ac.uk

  10. Prenatal screening • Terminations of pregnancy – 1% cases 1980 to 16% (max 31%) 1999 • Joint impact of changes in maternal age and prenatal screening on livebirth prevalence of Down Syndrome • Impact of prenatal screening and termination of pregnancy on perinatal mortality

  11. EUROCAT Cluster Advisory Service • Web-based • Make accumulated European (and American) experience easily accessible to registries/local health authorities • Balance epidemiologic investigation with appropriate risk communication and public health response • To be expanded to methodology for proactively investigating environmental exposures

  12. Research projects • Gastroschisis case-control study (ICBD) • World Oral Clefts epidemiology (WHO, ICBD) • Maternal-age specific Down Syndrome risks after age 40 (Morris, Alberman & Mutton) • Congenital Anomalies in twins (Pharoah) • Effect of prenatal diagnosis on postnatal outcome for selected cardiac anomalies (Garne) • Data available to European researchers

  13. www.eurocat.ulster.ac.uk

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