What are the benefits of CARDRISS?

The information held in the CARDRISS register can be used to:

Monitoring trends in specific conditions helps us to quickly spot any new risks to mothers and babies. 

This continuous monitoring would alert us if mothers were being exposed to a new infection or medicine that caused a particular condition such as cleft lip and palate in their babies.

This data can be used to measure the impact of policies that are aiming to reduce preventable conditions. 

For example, data from the register will allow us to see the impact of adding folate to flour on the number of babies with neural tube defects by looking at the data from before and after the date that fortification is introduced.

This data may provide information for families and the professionals caring for them on specific conditions. 

For example, data from the register can show:

  • how common a particular condition is
  • the pregnancy outcomes of affected babies
  • the longer-term outcomes of affected babies 

This information can help families and professionals know what to expect, and therefore to make plans about a baby’s care.

This data helps the NHS and other organisations to plan and develop services for babies with specific conditions. 

For example, the information can show how many babies (and then, over time, children and adults) in different areas of Scotland are affected by congenital heart disease, and therefore require access to specific medical and surgical treatments.

This information can help the NHS to monitor and continually improve the quality of care provided to babies with specific conditions. 

For example, data from the register can show how many babies undergoing surgical repair of gastroschisis require repeat admissions or operations.

The information can be used to monitor elements of the pregnancy and newborn screening programmes.

The CARDRISS register currently includes babies with the chromosomal and structural conditions for which screening is offered in pregnancy. 

Data from the register can therefore show how many babies are affected by the different screened-for conditions, the proportion that were detected through screening, and the associated pregnancy outcomes.

The information supports research into the causes, prevention, and treatment of specific conditions. 

Data from the register can be used alone, along with other routine records, or along with specially collected data (for example, through a clinical trial of a treatment for a specific condition) to support research studies.

The CARDRISS team works with other groups to deliver these benefits, for example clinical networks and audit teams, family support organisations, and academics.

Last updated: 06 October 2022