History and Funding
The National Congenital Anomaly System (NCAS) was set up in 1964 to monitor congenital anomalies in England and Wales. It is operated by the Office for National Statistics (ONS). The main purpose of the NCAS is surveillance, but NCAS also provides the best national data on prevalence.
It has long been recognised, however, that there is under reporting in NCAS. Therefore, NCAS embarked on an on-going programme of improving the level of reporting to the system by exchanging data with local congenital anomaly registers. In 1998, the CARIS register in Wales first exchanged data with NCAS and subsequently other registers followed as shown below.
1999 - East Midlands & South Yorkshire (formerly Trent)
2000 - North Thames (West), Merseyside and Cheshire
2002 - Wessex, Oxford
2003 - Northern, South West
All of these registers with the exception of the South West provide data to EUROCAT. Therefore the data presented here are for the remainder of England.
Population Coverage
All of England and Wales excluding those areas that are covered by the local registers and who also report to EUROCAT: Wales, East Midlands & South Yorkshire, North Thames (West), Merseyside, Oxford, Wessex and Northern.
Sources of Ascertainment
Reporting to NCAS is voluntary and it includes only live and stillbirths. Child health systems within NHS Trusts notify the Office for National Statistics (ONS) by means of a paper form (the SD56 form). This form contains a written description of the anomaly and details of the birth, along with some demographic information about the parents.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
No information is collected.
Stillbirth and Early Fetal Deaths
In England and Wales, a stillbirth is a child born dead on delivery at birth after 24 weeks or more gestation.
Exposure Data Availability
No information is collected.
Denominators and Controls Information
Office for National Statistics birth registration statistics.
Address for Further Information
National Congenital Anomaly System, Office for National Statistics,
Government Buildings,
Cardiff Road,
Newport,
Gwent NP10 8XG, United Kingdom
Last updated: April 2007