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History:

The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) was established in 2015 by Public Health England, incorporating the existing 7 regional Congenital Anomaly Registers of England (Northern England, Yorkshire and Humber, West Midlands, East Midlands and South Yorkshire, Thames Valley, Wessex, and South West England registers) which previously covered 49% of English births. New regional offices have been established to expand registration coverage to the whole of England, with the first fully national dataset in birth cohort 2018.

Size and coverage::

2015: Four regional NCARDRS teams, covering 21% of births in England, have reported Congenital Anomaly statistics for 2015: Northern England, South West England, Thames Valley, and Wessex. 2016: Seven regional NCARDRS teams, covering 49% of births in England, have reported Congenital Anomaly statistics for 2016: East Midlands & South Yorkshire, Northern England, South West England, Thames Valley, Wessex, West Midlands, and Yorkshire & Humber. Reporting coverage covers the whole of England from birth cohort 2018.

Legislation and funding:

NCARDRS as a register is authorised by the UK NHS Confidentiality Advisory Group (CAG) to collect data under Section 251 of the NHS Act, 2006.  This enables NCARDRS to collect patient data without explicit consent, therefore patient/parental consent is not required, though the right to opt out is in place. Public Health England exists to protect and improve the nation’s health and wellbeing, and reduce health inequalities. We do this through world-leading science, knowledge and intelligence, advocacy, partnerships and the delivery of specialist public health services. We are an executive agency of the Department of Health and Social Care, and a distinct delivery organisation with operational autonomy. We provide government, local government, the NHS, Parliament, industry and the public with evidence-based professional, scientific and delivery expertise and support.

Sources of ascertainment:

Notification to the register is voluntary. NCARDRS receives case notifications from the following hospital departments: Ultrasound, Fetal Medicine, Fetal Cardiology, Cytogenetics, Clinical Genetics, Pathology (Postmortem Reports), Delivery Suites, Neonatal Intensive Care Units, Paediatrics, Radiology, Specialist departments (e.g. paediatric nephrology and urology, orthopaedics, cardiology). The system is reliant primarily on notifications by individual clinicians and also on bulk datasets of cases from cytogenetics laboratories and hospital informatics departments. Remote access to tertiary hospital clinical systems and neonatal information systems is used to follow up cases and supplement the information notified to the Register; follow up information is also requested from notifying clinicians where relevant.

Exposure information:

Information is collected where it is available (not on every case) on occupation of mother, assisted conception, maternal illnesses, folic acid supplementation, maternal alcohol use and smoking, maternal substance abuse, and drugs taken during the first trimester.

Background information:

NCARDRS accepts notification of anomaly in the antenatal period, at delivery or at any time afterwards. There is no postnatal limit on diagnosis or notification.  The service also collects notifications for all pregnancy outcomes. Termination of Pregnancy for Fetal Anomaly: When a fetal anomaly has been detected, the pregnancy can be terminated before 24 weeks of gestation under Grounds 1(1)(a) of the Abortion Act. After 24 weeks pregnancies may only be terminated under Grounds E: physical or mental abnormalities giving a substantial risk that the child if born would be severely handicapped. Denominator data for terminations of pregnancy is not available. Stillbirth is defined by the Births and Deaths Registration Act 1953 section 41 as amended by the Stillbirth (Definition) Act 1992 section 1(1), as follows: a child which has issued forth from its mother after the 24th week of pregnancy and which did not at any time breathe or show any other signs of life.

Addresses and staff:

Service Lead: Sarah Stevens. Information Governance: Paul Davies. National Data Analyst: Danielle Martin. General enquiries: ncardrs@phe.gov.uk. National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), National Disease Registration Service, NHS Digital, 7 and 8 Wellington Place, Leeds, LS1 4AP, UK

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International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects