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

Abstract

Objective Firstly, to assess the completeness of ascertainment in the 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 the 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.

Residential Mobility During Pregnancy in the North of England

“…Cases are reported to the register from multiple sources including antenatal ultrasound, fetal medicine, cytogenetic laboratories, the regional cardiology centre, pathology departments and paediatric surgery to ensure a high case ascertainment. Details concerning the method for data collection have been described previously [19,20]. For this study, data on all pregnancies with a congenital anomaly delivered between 1 st Jan. 1985 and 31 st Dec. 2003 were extracted from Nor-CAS.…”

Confiabilidade das informações das declarações de nascido vivo com registro de defeitos congênitos no Município do Rio de Janeiro, Brasil, 2004

“…Nestes países, a existência de programas regionais e nacionais de vigilância de defeitos congênitos serve ainda como padrão ouro para estudos de avaliação de qualidade das informações constantes nos certificados 16,17,18 . Embora um estudo publicado recentemente sobre a confiabilidade de dados do SINASC no Município do Rio de Janeiro tenha demonstrado um excelente índice de concordância quanto à presença de defeitos congênitos 15 não se verificou se o mesmo se repete quanto ao tipo de defeitos congênitos relatado na declaração de nascido vivo.…”

Congenital anomaly notifications 2007, England and Wales

“…Cardiovascular anomalies are not readily apparent at birth and so may not be notified by a doctor or midwife on a SD56 form. 4 The local registers identify anomalies which become evident later in the child's life via alternative sources.…”

“…4 For this reason notifications to NCAS could be expected to be reasonably complete even for areas not covered by a local register. In 2007 the notification rate for non-register areas was less than half that of register areas (3.1 and 7.6 notifications per 10,000 live and stillbirths respectively).…”

“…4,5 The overall operation of NCAS will be reviewed during 2009 and ONS will be consulting on the requirements for statistics on congenital anomalies.…”