Welcome to The Congenital Heart Disease Website.
The data on this website has been updated with unvalidated data for the 2013-2014 period. 1 year follow up information is not yet available for this period.
Analysis of 2010/13 NCHDA data is now available
Today, the NCHDA audit publishes findings from the audit period April 1st 2010 to March 31st 2013. The analysis is based on 22,979 congenital heart disease surgery and interventional procedures submitted by 34 centres, including 14 specialist centres.
· Overall survival at 30-days following a heart operation in all specialist children heart units is above the pre-specified limit.
· Survival at 30-days after each of the 57 surgical and transcatheter cardiovascular interventions most frequently undertaken to treat congenital heart disease in children, young people and adults continues to be above the pre-specified limit.
· Leeds General Infirmary (LGI) was below the warning limit for the aggregate analysis of all pediatric surgical procedures.NICOR has validated LGI's 2013/14 data and undertaken preliminary analysis. This shows that in this more recent period, the predicted 30 day survival rates are now within the pre-specified limit. A supplementary report of this additional analysis is available here.
· LGI and Bristol Royal Hospital for Children were below the warning limit (98% control limit; green line) for a single procedure. Both hospitals have been contacted by NICOR and the relevant professional societies in accordance with Department of Health guidance.
Responses from both hospitals are available here.
· In 2012/13, over 40% of infants who required a procedure to treat a congenital heart malformation were diagnosed through antenatal screening, compared to less than a quarter of cases in 2003/4. This shows that antenatal diagnosis of congenital heart disease has improved over the past 7 years.
A more detailed account of these findings are provided in the NCHDA 2010-13 report available here.
The full analysis of the specific procedures is available on this portal via the 2010-13 Analysis link.
The centre level aggregate analysis for paediatric cardiac surgical procedures for 2010-13 are available here. A reanalysis of 2009-12 data is available here.
There is a new navigation tab "Research and Analysis" that links to a table of research and analysis files.
The Health and Social Care Information Centre and Office for National Statistics acknowledge that the statutory process for the registration of death across England and Wales does not in all cases guarantee completeness at any specified date. In the case of a death referred to the coroner, in most cases, it cannot be registered until the coroner's enquiries have been completed and a death certificate issued and provided to the Registrar of Births and Deaths. For research studies looking at cause of death this may mean a delay in the reporting process of these deaths, which could affect some analysis. While every effort is made to discuss this issue with customers at the time of their request both the HSCIC and ONS wish to make this clear to all users of death registration data provided through the two organisations. Please see the ONS website for further details.
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The National Congenital Heart Disease Audit (NCHDA) is managed by the National Institute for Cardiovascular Outcomes Research (NICOR), is the largest and most comprehensive national audit of its kind in the world and is now in its 14th year. The audit collects data from all centres undertaking congenital cardiac surgery and interventional procedures in the UK.
Among the information provided on the portal are profiles of every congenital heart disease centre in the UK, including the number and range of procedures they carry out and survival rates for the most common types of treatment.
Patients, parents and carers are encouraged to regard the facts and figures in the site as a useful source of information. This knowledge can then be used together with the information they receive from their family doctor and heart specialist in making any decisions on treatment options.
The audit is commissioned by the Healthcare Quality Improvement Partnership as part of the National Clinical Audit Programme* and clinically led by the British Congenital Cardiac Association and The Society for Cardiothoracic Surgery in Great Britain and Ireland.
We welcome your feedback about how useful you have found the information on this website.
How to use this information
For more information about how to interpret the information and more information about the site, go to information for patients