Congenital Anomalies in the British Isles

Abstract

SummaryThe first congenital anomaly register in the British Isles was established in 1949, with a national system for England and Wales introduced in 1969 in the wake of the thalidomide epidemic. There are now 14 regional congenital anomaly registers and three disease-specific registers. These registers involve an extensive local network of notifiers, use multiple sources of case ascertainment, consistent coding, and include cases resulting in termination of pregnancy for fetal anomaly following prenatal diagnosis. They have optimised the coverage, completeness and ascertainment of congenital anomalies within their population, and are therefore able to provide better quality data than the national system. There are notable variations in the prevalence of congenital anomaly subtypes within these regions that cannot be accounted for in terms of differences in case ascertainment or registration practices. This underlying variation in prevalence should be recognised and taken into consideration in the design of epidemiological studies that are investigating the contribution of environmental influences to congenital anomaly risk, to ensure correct interpretation of the findings. Local congenital anomaly register data has been used to investigate congenital anomaly risk in populations within the British Isles living close to landfill sites and incinerators, and to possible contaminants in drinking water. Whilst the inclusion of high quality data from established congenital anomaly registers enhances the quality of outcome data, such studies are currently limited by the lack of detailed information on exposure. Causal pathways will only , J. RANKIN 360 be determined if future studies combine high quality congenital anomaly data with increased information on exposure assessment.

Maternal body mass index and congenital anomaly risk: a cohort study

“…NorCAS records up to six congenital anomalies per case and adopts the exclusion criteria for minor anomalies used by the European Surveillance of Congenital Anomalies (EUROCAT). 25 NorCAS is a member of the British Isles Network of Congenital Anomaly Registers 26 and EUROCAT. All anomalies are coded using the WHO International Classification of Diseases version 10 (ICD 10).…”

Epidemiology of partial urorectal septum malformation sequence (or ‘persistent cloaca’): a population-based study in seven regions of England and Wales, 1985–2010

“…The British Isles Network of Congenital Anomaly Registers (BINOCAR) is a collaborative network of population-based congenital anomaly registers monitoring selected regions of the UK 11. All member registers record cases of congenital anomalies whether arising in late miscarriages (20–23 weeks’ gestation), stillbirths (≥24 weeks’ gestation), terminations of pregnancy for fetal anomaly (TOPFA, at any gestation), or live births.…”

Congenital anomaly and childhood cancer: A population‐based, record linkage study

“…Cases are coded using the WHO International Classification of Disease, version 10. NorCAS is a member of the British Isles Network of Congenital Anomaly Registers (BINOCAR) 18, and the European Surveillance of Congenital Anomalies (EUROCAT) 19. NorCAS employs the EUROCAT list of excluded anomalies and conducts comparative exercises with other registries through EUROCAT and BINOCAR confirming high levels of ascertainment.…”