Regional congenital anomaly registers in the UK

Abstract 

Regional congenital anomaly registers, while monitoring fewer than 50% of births in England and Wales, contribute almost 80% of the annual data entered into the National Congenital Anomaly System, with a notification rate over four times that from non-register areas. They employ multiple sources of ascertainment, producing high-quality data. This contrasts sharply with known deficiencies in a national system largely dependent on birth notifications. Details of anomalies in pre-24-week gestation deliveries and antenatal soft markers are unavailable from any other source. Members of the British Isles Network of Congenital Anomaly Registers contribute data to national, European and worldwide anomaly surveillance systems, pooling data on rare anomalies for research and providing valuable information for counselling, clinical management and audit. However, large areas of the UK remain outside register coverage, and most existing registers depend on precarious funding. Despite their acknowledged value, their long-term future is far from secure.

Keywords: congenital anomaly registers