Right to Opt-out
BINOCARD contains information of children born with a congenital anomaly up to 31st March 2015 and who had been registered with any of the following:
| Register Name | Short Name | Year started |
|---|
| Congenital Anomaly Register for Oxfordshire, Berkshire and Buckinghamshire |
CAROBB |
1991 |
| East Midlands and South Yorkshire Congenital Anomaly Register |
EMSYCAR |
1997 |
| Northern Congenital Abnormality Survey |
NorCAS |
1985 |
| South West Congenital Anomaly Register |
SWCAR |
2002 |
| Wessex Antenatally Detected Anomalies Register |
WANDA |
1994 |
- Kindly note that the database is de-identified and does not contain any personal information (including but not limited to names, NHS numbers, dates of birth, addresses) about you or your child.
- Furthermore, there are robust policies and security measures in place to ensure that data is processed solely for approved research projects and not misused.
- During their active periods of surveillance, registers provided information through leaflets and posters in maternity units and antenatal clinics within their catchment areas advising parents on how to opt-out of registering babies born with a congenital anomaly.
- If you had opted-out of registering your child originally, then your child's records would not have been submitted to the registers and hence would not be in BINOCARD in the first instance.
- Individuals (or parents of individuals) who wish to have their data removed from BINOCARD are advised to first refer to the Privacy Notice pages.
- We strongly encourage parents to permit their children's data to be used for research, given that it is important for findings to be based on analysis of as much data of rare congenital anomalies as possible.
- If you have any queries about what information is contained in BINOCARD, or wish to further discuss having your data removed, please contact the BINOCAR Management Committee (click for details) for assistance.
