Frequently Asked Questions About CAROBB
- What does CAROBB stand for?
Congenital Anomaly Register for Oxfordshire, Berkshire and Buckinghamshire
- When was CAROBB established?
CAROBB was established in 2003 with the expansion of the Oxford Congenital Anomaly Register which was funded by the Department of Health
- What data are held by CAROBB?
Information is held about all suspected and confirmed cases of congenital anomalies identified in pregnancy or confirmed at birth to mothers resident in the CAROBB area. The information is collected under strict confidentiality arrangements with approval from a research ethics committee (to enable research to be carried out) and also the Confidentiality Advisory Group of the Health Research Authority.
CAROBB contains information about all cases in Oxfordshire identified from 1991 onwards and all cases in Oxfordshire, Berkshire and Buckinghamshire from 2003 to 2015. This includes identifiable information such as name, address and date of birth.
- The collection of information about congenital anomalies from 1st April 2015 onwards
On the 31st March 2015 the CAROBB register will close to the receipt of new notification. Public Health England are establishing new National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).
Once the relevant information governance arrangements are in place at PHE a copy of the CAROBB register will be transferred to Public Health England. A copy will remain at the NPEU while arrangements are made for the future storage and de-identification of the data.
- How will information about congenital anomalies in the CAROBB area be collected in the future?
Once the information governance arrangements are in place, the new register NCARDRS being established by PHE will be responsible for collecting congenital anomalies information. Staff at NCARDRS will be in touch during April and May 2015 to let notifiers know how submit information about congenital anomalies to the new national register.
- What should I do about cases that I need to notify just now?
Please do NOT continue to submit cases to CAROBB. Please keep the information about any cases which you need to notify until the NCARDRS staff have been in touch to inform you about the new registration system. You can continue to use the CAROBB forms to keep this information until you hear from the NCARDRS staff.
- Do you pass data to anyone else?
We download de-identified information to the British Isles Network of Congenital Anomaly Registers (BINOCAR) and to the European Congenital Anomaly System (EUROCAT) to assist with surveillance and research. Both organisations have a strict code of conduct regarding data protection and confidentiality. No identifiable data is released for research unless ethical approval has been obtained.
In the future BINOCAR will be replaced by NCARDRS and NCARDRS will be responsible for notifying cases to the European system EUROCAT.
- Who is responsible for CAROBB?
The data custodian for CAROBB is Prof Jenny Kurinczuk who can be contacted by email: firstname.lastname@example.org or telephone: int+ 44 (0)1865 289700