European Surveillance of Congenital Anomalies

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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

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What is 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 gt250,000 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 www.eurocat.ulster.ac.uk

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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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www.eurocat.ulster.ac.uk
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