Congenital heart disease (policy currently in consultation)
The UK NSC policy on Congenital heart disease screening in newborns
This policy is currently being reviewed as part of the UK NSC's regular review cycle of all policies.
The review process began in Sep 2013 and is estimated to be completed by Mar 2014.
» Download the expert review for Congenital heart disease (PDF document, 1.84MB)
The UK NSC welcomes comments and feedback on the expert review during the consultation period that lasts from 12/09/2013 until 13/12/2013. Please send comments to John Marshall
Please note that all consultation submissions will be published on this page when the policy review is complete. Full details can be found in the confidentiality and disclosure section at the bottom of this page.
| Systematic population screening programme recommended
Congenital heart disease screening is part of the physical examination of newborn babies and again at 6-8 weeks.
A Programme Centre has been set up in England and all aspects of the examination are being reviewed.
What is screening?
Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or condition. They can then be offered information, further tests and appropriate treatment to reduce their risk and/or any complications arising from the disease or condition.
It is important to ensure that the benefits and downsides of screening have been properly thought through. The UK National Screening Committee (UK NSC) is responsible for reviewing screening policies every 3 years and making recommendations to ministers in the 4 UK countries about whether to not a screening programme for a certain condition should be set up.
» Find out more about screening, the role of the UK NSC or the policy review process
More about Congenital heart disease
Congenital heart anomalies affect about 8 in 1000 (approx. 1%) new born babies. In the vast majority of cases the cause of the anomaly is not known. In families where there is an affected child there is usually only a slight increase in risk with future pregnancies of around 3%. In some families with a recognised genetic cause, the risk of recurrent heart problems in future pregnancy is much higher.
» Read more about congenital heart disease on the Contact a Family website
Screening in the UK
Compare how screening is offered across the UK.
• British Congenital Cardiac Association
• British Heart Foundation
• Children's Heart Federation
• Royal College of General Practitioners
• Royal College of Midwives
• Royal College of Nursing
• Royal College of Paediatrics and Child Health
• Royal College of Surgeons
• Tiny Tickers
The stakeholder groups will be involved when the policy is next reviewed.
If you think your organisation should be added, please
More about the policy review process, including the role of stakeholders,
can be found in the guide to Engaging with the UK NSC's policy review process.
Comments form for screening review for congenital heart disease in newborns (Word document, 43KB, 08/10/13)
Confidentiality and disclosure
Information we receive, including personal information, may be published or disclosed in accordance with the access to information regimes (primarily the Freedom of Information Act 2000 (FOIA), the Data Protection Act 1998 (DPA) and the Environmental Information Regulations 2004).
If you want the information that you provide to be treated as confidential, please be aware that, under the FOIA, there is a statutory Code of Practice with which public authorities must comply and which deals, amongst other things, with obligations of confidence. In view of this, it would be helpful if you could explain to us why you regard the information you have provided as confidential. If we receive a request for disclosure of the information we will take full account of your explanation, but we cannot give an assurance that confidentiality can be maintained in all circumstances. An automatic confidentiality disclaimer generated by your IT system will not, of itself, be regarded as binding on the UK National Screening Committee.
The UK National Screening Committee will process your personal data in accordance with the DPA and, in most circumstances, this will mean that your personal data will not be disclosed to third parties.
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