Congenital anomaly surveillance in England - ascertainment deficiencies in the national system

Boyd, PA; Armstrong, B; Dolk, H; Botting, B; Pattenden, S; Abramsky, L; Rankin, J; Vrijheid, M; Wellesley, D; (2005) Congenital anomaly surveillance in England - ascertainment deficiencies in the national system. BMJ. p. 27. ISSN 1468-5833 DOI:

Text - Published Version
License: Creative Commons Attribution Non-commercial

Download (176kB) | Preview


Objective Firstly, to assess the completeness of ascertainment in die National Congenital Anomaly System (NCAS), the basis for congenital anomaly surveillance in England and Wales, and its variation by defect geographical area, and socioeconomic deprivation. Secondly, to assess die impact of the lack of data on pregnancies terminated because of fetal anomaly. Design Comparison of the NCAS with four local congenital anomaly registers in England. Setting Four regions in England covering some 109 000 annual births. Participants Cases of congenital anomalies registered in the NCAS (live births and stillbirths) and independently registered in the four local registers (live births, stillbirths, fetal losses from 20 weeks' gestation, and pregnancies terminated after prenatal diagnosis of fetal anomaly). Main outcome measure The ratio of cases identified by the national register to those in local registry files, calculated for different specified anomalies, for whole registry areas, and for hospital catchment areas within registry boundaries. Results Ascertainment by the NCAS (compared with data from local registers, from which terminations of pregnancy were removed) was 40% (34% for chromosomal anomalies and 42% for non-chromosomal anomalies) and varied markedly by defect, by local register, and by hospital catchment area, but not by area deprivation. When terminations of pregnancy were included in the register data, ascertainment-by NCAS was 27% (19% for chromosomal anomalies and 31% for non-chromosomal anomalies),and the geographical variation was of a similar magnitude. Conclusion The surveillance of congenital anomalies in England is currently inadequate because ascertainment to the national register is low and non-uniform and because no data exist on termination of pregnancy resulting from prenatal diagnosis of fetal anomaly.

Item Type: Article
Keywords: Malformations, notification, Abnormalities, epidemiology, Abortion, Induced, statistics & numerical data, Data Collection, standards, England, epidemiology, Female, Humans, Infant, Newborn, Population Surveillance, Pregnancy, Registries, standards, Research Support, Non-U.S. Gov't
Faculty and Department: Faculty of Public Health and Policy > Dept of Social and Environmental Health Research
Research Centre: Centre for Maternal, Reproductive and Child Health (MARCH)
PubMed ID: 15561730
Web of Science ID: 226176700017


Download activity - last 12 months
Downloads since deposit
Accesses by country - last 12 months
Accesses by referrer - last 12 months
Impact and interest
Additional statistics for this record are available via IRStats2

Actions (login required)

Edit Item Edit Item