Congenital conditions in Scotland
An Official Statistics publication for Scotland
2000 to 2020
- 14 February 2023 (Latest release)
- Statistical report
- Public Health Scotland
- Births and maternity
- Population health
About this release
This release by Public Health Scotland (PHS) focuses on congenital conditions. It provides current best estimates of the number of babies with serious congenital conditions among pregnancies ending in Scotland up to 2020. In 2018 an initiative to set up a national congenital condition register in Scotland started, an update on this is also provided.
- 1,375 babies with a serious congenital condition were identified among pregnancies ending in Scotland in 2020. This is 287.8 per 10,000 total (live and still) births.
- 1,047 (76%) of these babies were live born. This is 220.1 per 10,000 live births. This means that around 1 in 45 babies born alive in Scotland in 2020 had a serious congenital condition.
- Overall, the commonest group of conditions seen was congenital heart diseases (361 babies with a CHD; 75.6 per 10,000 total births).
- Among the specific conditions included in the antenatal screening programme, the commonest condition seen was Down syndrome (trisomy 21) (88 babies with Down syndrome; 18.4 per 10,000 total births).
- The birth prevalence of congenital conditions increased from the mid 2000s to a peak in 2015. Subsequently, prevalence fell sharply from 2015 to 2018, before increasing again slightly in 2020. Trends over time in condition rates are likely to be influenced by data quality issues and changes in clinical and diagnostic practices, as well as possibly genuine variation in the chance of congenital conditions.
Congenital conditions are variations of body structure or function which are present from birth. A baby’s condition (or conditions) may be due to an underlying genetic variation, or exposure of the mother to factors that disrupt normal development. In many cases, no specific cause is found. Increasingly, conditions can be detected during pregnancy through antenatal screening.
The Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS) was set up in 2018 to establish a new national, prospective register of babies with congenital and rare conditions (the CARDRISS register). As an interim measure whilst the register is being established, the CARDRISS team have brought together existing national records to produce a linked dataset on babies with congenital conditions (the Scottish Linked Congenital Condition Dataset, SLiCCD). As the CARDRISS register is not yet up and running, this publication uses SLiCCD to provide current best estimates of the occurrence of major congenital conditions among pregnancies ending in Scotland in 2000 to 2020 inclusive. Live born babies diagnosed before their first birthday; miscarriages and stillbirths from 20 weeks of pregnancy onwards; and terminations of pregnancy at any stage of pregnancy are all counted. We will update and publish these estimates every year until the CARDRISS register can be used as the source of national statistics on conditions.
The next release of this publication will be October 2023.
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Older versions of this publication
Versions of this publication released before 16 March 2020 may be found on the Data and Intelligence, Health Protection Scotland or Improving Health websites.