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European Surveillance of Congenital Anomalies PowerPoint PPT Presentation

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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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European surveillance of congenital anomalies l.jpg

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

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  • 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

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Map of Registries

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Public Health Importance

  • 2% + births

  • 20% stillbirths and infant deaths

  • Childhood morbidity and lifelong disability

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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

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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

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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

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EUROCAT Guide 1.3 revision

  • Improved drug (ATC) coding

  • Updated coding of prenatal screening/diagnosis

  • Coding of sociodemographic variables

  • Data Quality Indicators

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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:

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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

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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

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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

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