NorCAS - Information for parents
Information for parents
If you live in the North of England and you have had a pregnancy affected by a congenital anomaly since 1985, you and your baby's details will be on the Survey.
Consent
NorCAS is not a consented survey. That means that we do not need consent from parents to hold the data that we collect. This is because the appropriate government bodies have decided that, among other things, getting consent for this information would affect the quality of the data and might be distressing for parents. It is very important that congenital anomaly registers collect information on all cases to allow for monitoring for environmental and other causes. NorCAS is part of the British Isles Network of Congenital Anomaly Registers (BINOCAR). BINOCAR applied for and was granted Section 60 Class Support under the Health and Social Care Act 2001 for the collection of personal information without consent on behalf of all the member registers. For more details, click here.
Data collected
Data is collected as soon as a congenital anomaly is diagnoses, antenatally or after delivery. We collect information on congenital anomalies diagnosed up to the age of twelve. Data fields include mother's date of birth, address at booking and delivery and baby's details including birth weight and gestation. A NorCAS form is available here. No data besides what is included on this sheet is collected. Information on minor anomalies are not included. An exclusion list is available here.
What is the data used for?
2009 is the 25th year of data collection for NorCAS. This makes it one of the longest running congenital anomaly registers in the world. This data is not collected efficiently nationally and there recently have been several publications in medical journals stressing the importance of regional congenital anomaly registers. NorCAS data is used for many reasons including:
Audit - The data is used by hospitals to monitor the efficiency of their antenatal screening programmes.
Surveillance - The data is used by the RMSO and other organisations, such as the Office for National Statistics, to monitor for clusters of congenital anomalies.
Research - The RMSO data is used for research when proper ethics approval is obtained.
Who runs NorCAS?
NorCAS is housed at the Regional Maternity Survey Office. The Chair is Professor John Wilkinson, Professor of Public Health at Durham University and the Director of the North East Public Health Observatory. The NorCAS Steering Group has members from many disciplines, including genetics, pathology, paediatrics, fetal medicine and midwifery. If you have any queries about NorCAS, please contact Mary Bythell, the RMSO Coordinator.
Links:
Antenatal Results and Choices - ARC is the only national charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process
Association for Spina Bifida and Hydrocephalus - ASBAH is the leading UK registered charity providing information and advice about spina bifida and hydrocephalus]
Gastroschisis Exompholos Extrophies Parents Support Network - GEEPS is an international network of families and friends of children born with abdominal abnormalities like gastroschisis and exomphalos.
Down's Syndrome Association - The Down's Syndrome Association aims to help people with Down's syndrome to live full and rewarding lives.
Contact a Family is a UK charity for families with disabled children.
Share your opinions and photos with us:
If you have any requests or concerns regarding the website content or pictures of your children that you are happy for us to put on our website, please email them to Mary Bythell.
