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British Isles Network of Congenital Anomaly Registers (BINOCAR)

Centre of Environmental and Preventive Medicine

Funding Body: Public Health England
Project Investigator: Joan Morris

Overview

BINOCAR is a network of regional and disease-specific registers collecting information about congenital anomalies occurring in the United Kingdom and the Republic of Ireland.

Congenital Anomalies

  • are a major cause of fetal and infant mortality, childhood morbidity and long-term disability
  • carry a high burden to affected individuals, their families and the community in terms of quality of life, participation in the community and the need for services

The main objectives of BINOCAR are

  • surveillance and analysis of congenital anomalies
  • monitoring and audit of health provision, detection and outcomes for congenital anomalies
  • provision of information to support planning and administration of the provision made for health and social care for pregnancies and infants affected by congenital anomalies
  • medical research into the causes and consequences of congenital anomalies

Organisation of BINOCAR

  • BINOCAR Hub based in the Wolfson Institute
  • 7 regional registers are Full Members of BINOCAR . They cover over 260,000 births per year (36% of all births in England and Wales) and provide data to the BINOCAR Hub for use in annual surveillance reports
  • 2 national disease-specific registers for Down (T21), Edwards (T18) and Patau (T13) syndromes (NDSCR) and Cleft Lip & Palate anomalies (CRANE) are also members of BINOCAR
  • All full member registries are high quality multiple source registries, ascertaining terminations of pregnancy as well as births

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