What information does CARDRISS hold?

The CARDRISS register holds the following information:

  • mother and baby’s personal details, including names, dates of birth, and postcode
  • relevant medical history, including family history of congenital conditions
  • details of all conditions present in the baby
  • information on when and how the baby’s conditions were identified, including details of screening and diagnostic tests that have been carried out

Further information about how information is kept safe is available.

Personal details are included in the register so that records relating to the same mother or baby can be linked together and to ensure that the same baby is not counted more than once.

Holding personal details also allows CARDRISS to link information held on the register together with other information held by Public Health Scotland (PHS), for example hospital admission and death records, to provide further information on babies with congenital conditions, for example whether survival of babies is improving over time.

Last updated: 06 October 2022