BINOCAR Registers
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British and Irish Network of
Congenital Anomaly Researchers

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 NameShort NameYear 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
National Down Syndrome Cytogenetic Register  NDSCR  1989
  1. 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.
  2. Furthermore, there are robust policies and security measures in place to ensure that data is processed solely for approved research projects and not misused.
  3. If your child had been previously registered for a congenital anomaly, you have the right to have your child's data removed from BINOCARD at any stage.
  4. Whilst 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, the right of parents to withdraw any information about their children and/or themselves must be respected.
  5. If you wish to have your child's data removed from BINOCARD, or have any queries about what information is contained in BINOCARD, please contact the BINOCAR Management Committee at j.k.morris@qmul.ac.uk for assistance.
  6. Since BINOCAR is unable to identify any individual in the database, the management committee will liaise with NCARDRS to establish which record(s) should be deleted from the database, following an opt-out request.
  7. 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.