NCARDRS Congenital Anomaly Official Statistics Report, 2021

This report is the National Congenital Anomaly and Rare Disease Registration Service’s (NCARDRS) seventh report on congenital anomalies and the fourth report describing national data for England. It describes the number of babies delivered between 1 January and 31 December 2021 with one or more congenital anomalies. Readers who are interested in congenital anomalies prior to 2021 are directed to our previous reports on data from 2015 to 2020.

The report is a vital resource for commissioners and providers of healthcare involved in the diagnosis and management of babies with congenital anomalies. It also provides high quality data for researchers and those seeking detailed information about congenital anomaly 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 anomalies are defined as being present at delivery, likely originating before birth, and include structural, chromosomal and genetic conditions. Data are collected broadly in accordance with definitions and guidelines of the European Surveillance of Congenital Anomalies (EUROCAT). Congenital anomalies 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. For more information about data collection, definitions and coding see the Technical details document which accompanies this report. 

Consistent with international practice on prevalence reporting, only congenital anomalies 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 complete weeks and terminations at any gestation regardless of their civil registration status.

Established on 1 April 2015 in response to the UK Rare Disease Strategy, NCARDRS assumed responsibility for congenital anomaly registration in regions with an existing register and, building on this expertise, expanded geographically to provide congenital anomaly registration across the whole country. National reporting in England has been in place for babies born since 2018. On 1 February 2023, responsibility for NCARDRS and the rest of the National Disease Registration Service (NDRS) and NHS Digital transferred to NHS England. NHS England is the data controller for this data. 

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.