Introduction

This report is the National Congenital Anomaly and Rare Disease Registration Service’s (NCARDRS) 5th report on congenital anomalies and the second report describing national data for England. It describes the number of babies delivered between 1 January and 31 December 2019 in England with one or more congenital anomalies.

Readers who are interested in congenital anomalies prior to 2019 are directed to our previous reports on data from 2015 to 2018 which cite relevant sources of information for historical data collected before the inception of NCARDRS and give details of which regions were included in each report.

Public Health England (PHE) launched NCARDRS on 1 April 2015. Prior to this, registries existed in some regions of England, and they reported data for the benefit of clinicians, epidemiologists, researchers, and patients. In response to the UK Rare Disease Strategy and the Chief Medical Officer’s recommendation to ensure national coverage, 3 new reporting regions covering the East of England, London and the South East, and the North West were established. Data collection in new regions started from 1 April 2017 and they first reported in 2018.

National coverage of congenital anomaly reporting has only been possible since 2018. While the data in this report refers to babies born between January and December 2019, most of this data were registered and completed in 2020.

This report is intended primarily as a useful resource for commissioners and providers of healthcare needed for 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.

The ambition to provide a comprehensive national register relies on the commitment of healthcare professionals across the country to report babies diagnosed or suspected with congenital anomalies to NCARDRS.

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, genetic laboratories and many more. 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 the dedication of these notifying healthcare professionals that this important and reliable 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.