Congenital Conditions open data

This open data includes four tables. The tables titled Rates and numbers in Scotland (2021–2022) and Rates and numbers in Scotland (2000–2020) include data on congenital conditions at Scotland level. The tables titled Rates and numbers by maternal health board of residence (2021–2022) and Rates and numbers by maternal health board of residence (2000–2020) include data on congenital condition groups by NHS Board. The rates are per 10,000 births. The table Rates and numbers in Scotland (2000–2020) and the table Rates and numbers by maternal health board of residence (2000–2020) use SLiCCD as a data source and provide estimates for pregnancies ending in Scotland between 2000 and 2020 (inclusive). The table Rates and numbers in Scotland (2021–2022) and the table Rates and numbers by maternal health board of residence (2021–2022) use the CARDRISS register as a data source and provide estimates for pregnancies ending in Scotland between 2021 and 2022 (inclusive).000 births.

Data and Resources

Rates of Congenital Conditions by health board ...CSV
Rates of Congenital Conditions by health board of treatment (2021 - 2022)
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Rates of Congenital Conditions by health board ...CSV
Rates of Congenital Conditions by health board of treatment (2000 - 2020)
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Rates and numbers of Congenital Conditions in ...CSV
Rates and numbers of Congenital Conditions in Scotland from 2021 to 2022
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Rates and numbers of Congenital Conditions in ...CSV
Rates and numbers of Congenital Conditions in Scotland from 2000 to 2020
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Additional Info

Field	Value
Source	Scottish Congenital Conditions Linked Dataset (SLiCCD) for 2000–2020 data, Congenital Conditions and Rare Diseases Registration and Information Service for Scotland register (CARDRISS register) for data from 2021 onwards.
Author	PHS CARDRISS team
Maintainer	PHS Open Data team
Last Updated	February 25, 2025, 14:22 (GMT)
Created	August 28, 2023, 06:19 (BST)
Contact Address	Public Health Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB
Subject	Congenital Conditions
Frequency	Annual
Time frame of data and timeliness	All pregnancies ending in the time period 2000–2022.
Coverage	Scotland, January 2000–December 2022
Completeness	The data covers all pregnancies ending in Scotland i.e. it is not a sample. For more detailed information on completeness see the Congenital Conditions in Scotland (2021–2022) Technical Report. For further information on SLiCCD completeness, refer to the Congenital Conditions in Scotland (2000–2021) Technical Report.
Accuracy	The data sources used to feed SLiCCD and CARDRISS are long standing population based datasets that are completed to a high standard. CARDRISS register data processing includes an additional validation step where trained staff assess provisional registrations and clinical records to ensure diagnostic code accuracy. The register is considered the gold standard for national data on congenital conditions. For more information, see 'Establishing a national congenital condition register for Scotland' section in the Congenital Conditions in Scotland (2021-2022) Main Report.
Continuity of data	SLiCCD was used as the data source for estimating the number of babies with congenital conditions in pregnancies ending in Scotland between 2000 and 2020. The CARDRISS register has replaced SLiCCD and is now used for generating data from 2021 onwards. With the launch of the CARDRISS register, SLiCCD will no longer be updated, and the previously published data for 2021 is now superseded by the register data provided through this release. The total birth prevalence of major congenital conditions in Scotland based on CARDRISS data for 2021 was about 20% lower than the estimate from SLiCCD. For more details, see the Methods and Appendix 1 of the Congenital Conditions in Scotland (2021–2022) Technical Report. Contact the CARDRISS team for support in interpreting any historical trends related to the transition from SLiCCD to the CARDRISS register.
Concepts and definitions	See Methods and Glossary of Congenital Conditions Technical Report.
Disclosure	After discussion with information governance advisors, no disclosure control has been applied to tables at Scotland level. This is to preserve the value of reporting on these rare conditions. Disclosure control has been applied to tables Rates and numbers by maternal health board of residence (2021–2022) and Rates and numbers by maternal health board of residence (2000–2020), which provide data at NHS Board level.
Revision statement	Figures contained within each publication may be subject to change in future publications. See PHS Statistical Revisions Policy.
Official statistics designation	Official Statistics
Relevance and key uses of the statistics	Providing crude numbers and prevalence figures for a wide range of congenital conditions for all pregnancies ending in Scotland. Making information publicly available for population health monitoring, and service planning and provision.
Format	CSV
Language	English
Links	Congenital Conditions in Scotland (2000–2021) (publichealthscotland.scot), Congenital Conditions in Scotland (2021–2022) (publichealthscotland.scot)