What is CARDRISS?

CARDRISS is the Congenital Conditions and Rare Diseases Registration & Information Service for Scotland. 

Public Health Scotland (PHS) manages this service.

CARDRISS includes a national register that collects and holds information about babies in Scotland with a major structural or chromosomal condition or recognised syndrome.

The register will be extended in the future to also collect and hold information on other rare diseases.

Babies are included in the register if their condition is identified at any point up to their first birthday.

Babies with a condition are also included if the pregnancy ends in a miscarriage or stillbirth (from 20 weeks of pregnancy onwards) or a termination of pregnancy (at any stage of pregnancy).

The register includes babies from pregnancies ending in January 2021 onwards where the baby meets this inclusion criteria. ​

Why has CARDRISS been established?

National policy which is seeking to improve the care and outcomes of individuals with rare diseases provides important context for CARDRISS. 

The first UK Strategy for Rare Diseases (external website) was published in 2013.

It's Not Rare to Have a Rare Disease (external website)  was published in 2014. This strategy was the supporting implementation plan for Scotland.

As part of Scotland’s response (external website) to the UK strategy, in 2018 the Scottish Government commissioned ISD (now PHS) to establish a national register. 

Before this Scotland never had a national register. This was a significant gap in Scotland’s population health data. 

The 2013 strategy concluded in 2020.

A final progress report (external website) was published by the Scottish Government in February 2021. 

A new UK Rare Diseases Framework (external website) was published in January 2021. 

Each of the UK nations will publish specific 5-year action plans in 2022 in response to the framework.

Registers in the rest of the UK, Europe and elsewhere

Information on congenital conditions is provided for:

  • England by the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) (external website)
  • Wales by the Congenital Anomaly Register and Information Service (CARIS) (external website)

Northern Ireland does not currently have a national congenital condition register however discussions on establishing a register are underway.

Information at the European level is provided by the European network of congenital condition registers, also known as EUROCAT (external website).

CARDRISS is a member of EUROCAT.

Information at the global level is provided by the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) (external website).

Last updated: 06 October 2022