Public Health Scotland (PHS) runs the Congenital Conditions and Rare Diseases Registration & Information Service for Scotland​ (CARDRISS).


CARDRISS includes a national register of information about babies in Scotland with:

  • a major structural or chromosomal condition
  • a recognised syndrome

The register will be extended to include information on other rare diseases in the future.

The information on the register is stored securely and in line with Data Protection legislation and the Common Law Duty of Confidentiality. More information about how information is kept safe is available.

Further resources are available including:

  • links to information materials
  • national publications
  • other relevant CARDRISS documentation

To contact the CARDRISS team, please email phs.cardriss@phs.scot

Last updated: 09 January 2023