A local congenital anomalies register: monitoring preventive interventions.

ABSTRACT

BACKGROUND: There is need for good quality data on congenital anomalies for monitoring (1) interventions for primary prevention and (2) prenatal diagnosis with advice on termination of affected pregnancies. METHOD: A register was compiled of congenital anomalies arising among births to Leeds residents in an 18 month period (13,596) and terminations (3015) in a related pregnancy cohort. Multiple sources of ascertainment were used and the full range of structural anomalies was included. RESULTS: The total incidence of anomalies (excluding spontaneous abortions) was 1.31 per cent. Incidence rates for the major categories are reported and compared with birth prevalence rates from British studies in the 1950-1960s. It was found that 31.3 per cent of the known anomalies were aborted; 2.26 per cent of the legal abortions were for a congenital anomaly. The overall birth prevalence rate was 1.10 per cent. Neural tube defects are used as an example of the use of a local congenital anomalies register in auditing preventive measures. CONCLUSION: A local congenital anomalies register is a valuable instrument in monitoring the impact of preventive measures, but it should include data on legal terminations as well as cases detected at birth and subsequently.