NCARDRS Congenital Condition Official Statistics Report, 2022

This report is the National Congenital Condition and Rare Disease Registration Service’s (NCARDRS) eighth report on congenital conditions and the fifth report describing national data for England. It describes the number of babies delivered between 1 January and 31 December 2022 with one or more congenital conditions. Readers who are interested in congenital conditions prior to 2022 are directed to our previous reports on data from 2015 to 2021.

The report is a vital resource for commissioners and providers of healthcare involved in the diagnosis and management of babies with congenital conditions. It also provides high quality data for researchers and those seeking detailed information about congenital condition prevalence in England. This annual report will also be of interest to healthcare professionals involved in the direct care of patients, patient groups and third-sector organisations. 

Congenital conditions are defined as being present at delivery, likely originating before birth, and include structural, and genomic conditions (including chromosomal and single-gene disorders). Data are collected broadly in accordance with definitions and guidelines of the European Surveillance of Congenital Anomalies (EUROCAT). Congenital conditions are coded using the International Classification of Disease version 10 (ICD-10) with British Paediatric Association (BPA) extension, which gives supplementary one-digit extensions to ICD-10 codes to allow greater specificity of coding. Classification of conditions into similar groups for reporting is also conducted broadly according to EUROCAT guidance, with some additions to subgroups to increase granularity. For more information about data collection, definitions and clinical coding see section 2 of the Technical details and the Condition subgroups inclusion ICD-10 list documents that accompany this report.

Consistent with international practice on prevalence reporting, congenital conditions in the following categories are included in this report:

• live births
• stillbirths
• late miscarriages between 20-23 completed weeks of gestation
• terminations at any gestation

In this report, baby/babies is used throughout to refer to all pregnancy outcomes; live births, stillbirths, late miscarriages between 20-23 completed weeks of gestation, and terminations at any gestation regardless of their civil registration status.

Throughout this report we use the terms ‘woman’ and ‘women’ to refer to those who are pregnant, or who have given birth. We acknowledge that not all people who are pregnant or give birth identify as women. It is important that evidence-based information about congenital conditions is inclusive and personalised to respect people’s gender identities.

The multi-source approach to data collection in NCARDRS is dependent on the dedication of healthcare staff in a range of settings including maternity units, neonatal units, diagnostic departments and genomic laboratory hubs. This collaborative approach enables high ascertainment and completeness of data, ensures consistency and standardisation across the country and has been key to the delivery of national coverage. It is thanks to these notifying healthcare professionals that this crucial, high-quality information is available for clinicians, researchers, patients, and their families. More information about the data collection process can be found in the accompanying Technical details document.