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Cohort profile: the National Congenital Anomaly Registration Dataset in England
Jennifer M Broughan1, Ben Wreyford2, Danielle Martin2
1National Disease Registration Service, Data & Analytics, Transformation Directorate, NHS England, Leeds, England jennifer.broughan@nhs.net.
Insights
The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) in England collects data on congenital anomalies (CAs). This valuable resource aids in understanding CA epidemiology, surveillance, and prevention for improved public health outcomes.
Area of Science:
- Public Health and Epidemiology
- Genetics and Rare Diseases
- Healthcare Data Management
Background:
- Congenital anomalies (CAs) represent a significant public health concern, necessitating robust data collection and analysis.
- Prior to 2015, CA data in England were fragmented across regional registers, limiting comprehensive understanding and surveillance.
- The establishment of the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) aimed to centralize and enhance CA data.
Purpose of the Study:
- To describe the establishment, scope, and function of the NCARDRS in England.
- To highlight the NCARDRS as a critical resource for understanding the epidemiology, surveillance, and prevention of CAs.
- To emphasize the NCARDRS's role in supporting research, clinical audit, and public health initiatives related to CAs.
Main Methods:
- NCARDRS collects individual-level data on pregnancies, fetuses, babies, children, and adults with CAs and rare diseases across England.
- Data are sourced from secondary, tertiary, and private healthcare providers, as well as laboratories involved in fetal medicine, maternity, and pediatric services.
- The service ensures quality assurance, curation, and analysis of data, with identifiers collected for linkage to other health and population statistics.
Main Results:
- NCARDRS achieved national coverage for CA registration by 2018, expanding from 22% of total births in 2015.
- Approximately 21,000 babies with CAs are registered annually, covering around 600,000 births, representing the largest birth coverage globally for a CA register.
- Published annual statistics include birth prevalence, risk factors, survival rates, and associations with maternal age and mortality, supporting public health indicators.
Conclusions:
- NCARDRS provides a comprehensive and invaluable resource for the epidemiological study and surveillance of congenital anomalies in England.
- The service's data facilitate a deeper understanding of CA patterns, enabling targeted prevention strategies and improved healthcare service evaluation.
- Continued data linkage and analysis by NCARDRS will further enhance insights into CAs, supporting advancements in their prevention and treatment.
Purpose:
The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), part of National Disease Registration Service in National Health Service England, quality assures, curates and analyses individual data on the pregnancies, fetuses, babies, children and adults with congenital anomalies and rare diseases across England. The congenital anomaly (CA) register provides a resource for patients and their families, clinicians, researchers and public health professionals in furthering the understanding of CAs.
Participants:
NCARDRS registers CAs occurring in babies born alive and stillborn, fetal losses and terminations in England. NCARDRS collects data from secondary and tertiary healthcare providers, private providers and laboratories covering fetal medicine, maternity or paediatric services. Data describe the pregnancy, mother, baby and anomaly. Established in 2015, NCARDRS expanded CA registration coverage from 22% of total births in England in 2015 to national coverage, which was achieved in 2018. Prior to 2015, data collection was performed independently by regional registers in England; these data are also held by NCARDRS.
Findings To Date:
NCARDRS registers approximately 21 000 babies with CAs per year with surveillance covering around 600 000 total births, the largest birth coverage for a CA register globally. Data on prevalence, risk factors and survival for children with CAs are available. Data have been used in several peer-reviewed publications. Birth prevalence statistics, including public health indicators such as the association with maternal age, infant and perinatal mortality, are published annually. NCARDRS supports clinical audit for screening programmes and service evaluation.
Future Plans:
NCARDRS provides a valuable resource for the understanding of the epidemiology, surveillance, prevention and treatment of CAs. Currently, approximately 21 000 new registrations of babies or fetuses with suspected or confirmed CAs are added each year. Identifiers are collected, enabling linkage to routinely collected healthcare and population statistics, further enhancing the value of the data.
