NCARDRS Congenital Condition Official Statistics Report, 2023

Alongside the report bulletin itself, the following resources that accompany this report can be found at the bottom of the overview page as downloadable files.

Spreadsheets containing data tables are published with detailed counts and rates of congenital conditions nationally, by region and ICB. Information on birth prevalence, genomic status and birth outcome is presented.

This year, as well as counts for the birth year 2023, separate data tables are included updating and restating counts and prevalence estimates for all reported birth years with national registration coverage (2018 - 2022). This has been provided by the 9 former Government Office Regions (GOR) and by the 42 Integrated Care Boards (ICB), for major condition groups (level 1), condition subgroups (level 2) and individual congenital conditions (level 3) (Data tables 3a to 3c). 

Information on methodology used to generate the report, inclusion criteria, and a description of registration and coding processes is published in the Technical Details document. Detailed information on the calculations used to calculate birth prevalence, geographical coverage and any changes to ICB groupings for statistical disclosure control are also included.

NCARDRS receives data from a range of national and local data sources to support the identification, registration and surveillance of congenital conditions and rare diseases. These data are received, processed and linked within the data management system and form the basis of the registrations reported by the NCARDRS.

This year, a summary of the multiple sources of data and information that NCARDRS used to register congenital conditions for babies born in 2023 has been included alongside the Technical Details. It describes the data available for each NHS trust providing maternity and paediatric services, as well as laboratory sources and national data sources used for the registration of congenital conditions.

Information on how congenital conditions are classified and grouped for reporting. Classification of conditions into similar groups for reporting is also conducted broadly according to European Surveillance of Congenital Anomalies (EUROCAT) guidance, with some additions to subgroups to increase granularity.