NICOR: National Institute for Cardiovascular Outcomes Research

NICOR

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  • Adult Cardiac Interventions
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  • Congenital Heart Disease
    • Background
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    • Data Collection
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  • Heart Failure
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• NICOR and data.gov.uk

Background

Monitoring of survival rates after cardiac surgery was first introduced to the UK in 1977 with voluntary submission of data to the Society of Cardiothoracic Surgeons of Great Britain and Ireland.

The Central Cardiac Audit Database (CCAD) was set up in 1996 to coordinate data collection activities. 

The Congenital Heart Disease website contains dynamic content that allows patients to investigate the data from congenital heart centres across the UK. This website provides information about each congenital heart disease centre, the procedures/operations undertaken and the rate of survival for patients at each UK centre.

As a result of the Bristol Inquiry, which concluded that up to 35 babies died unnecessarily following referral to the Bristol Royal Infirmary, all paediatric cardiac centres in England and Scotland participate in the congenital heart disease audit.

This allows outcome analysis for the surgical or cardiac interventional treatment of children with congenital heart disease.

Data is collected electronically in a secure format. By using a unique patient identifier (the patient's NHS number) mortality and re-intervention are tracked centrally through the:

• Office of National Statistics
• General Register Offices of Scotland
• Northern Ireland

Independent data validation confirms the information is accurate. Patients, healthcare professionals and the public have access to information about the care they receive and national survival rates via the congenital heart disease portal.