NCARDRS Congenital Anomaly Official Statistics Report, 2020

This report is the National Congenital Anomaly and Rare Disease Registration Service’s (NCARDRS) sixth report on congenital anomalies and the third report describing national data for England. It describes the number of babies delivered between 1 January and 31 December 2020 with one or more congenital anomalies. Readers who are interested in congenital anomalies prior to 2020 are directed to our previous reports on data from 2015 to 2019.

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, only congenital anomalies in live births, stillbirths, late miscarriages between 20-23 completed weeks of gestation and terminations at any gestation were included.

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.

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.  NCARDRS, along with the rest of the National Disease Registration Service (NDRS), transferred into NHS Digital on the 1 October 2021.

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 genetic laboratories. 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.