The UK NSC recommendation on Familial hypercholesterolaemia screening in children
| Recommendation |
Systematic population screening programme not recommended |
| Last review completed |
April 2020 |
| Next review due in |
2023/24 |
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| Key downloads |
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Find general information about population health screening.
Why is screening not recommended by UK NSC?
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The 2019 evidence review found that there is still not enough evidence to recommend population screening for FH. This is because at present:
- screening may benefit children with FH but it is not known whether this will result in the prevention of heart disease in later life
- the age at which screening should take place is still not clear
- there is UK research on screening in children aged 2 years; there is ethical concern about identifying children at this age because there is no recommended treatment for them
- there is UK research on screening in children aged 9 years; these children are closer to the age where the treatment is clearer, but the study was small, and we need more research
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Screening at any age would identify children with other causes of high cholesterol and there is no recommended treatment for these children.
An ethics task group was established in December 2020 to advise the UK NSC on ethical issues raised by screening children at different ages for evidence of familial hypercholesterolaemia in them and their families. The group will report its findings in summer 2021.
More about Familial Hypercholesterolaemia (child)
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Familial hypercholesterolaemia (FH) is a hereditary condition that causes very high cholesterol (fat) in the blood. This ‘bad’ cholesterol is called low density lipoprotein (LDL). This can build up in the blood vessels putting the person at risk of developing heart disease in their adult life. The cholesterol build-up usually starts during childhood.
The aim of a population screening programme would be to identify children who have inherited the condition.
This would lead to early diagnosis in children to then start treatment to stop them from developing heart disease when they get older. Treatment usually includes a healthy diet combined with medication, called statins, to help reduce cholesterol. Children with FH would start statin treatment from 10 years old.
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Stakeholders
• AntiCoagulation Europe
• British Cardiovascular Society
• British Heart Foundation
• British Inherited Metabolic Disease Group
• Cardiac Risk in The Young
• Cardio & Vascular Coalition
• Cardiomyopathy UK
• Children's Heart Federation
• Circulation Foundation
• Faculty of Public Health
• Genetic Alliance UK
• HEART UK
• Institute of Child Health
• Metabolic Support UK
• MetBio
• Royal College of General Practitioners
• Royal College of Nursing
• Royal College of Paediatrics and Child Health
• Royal College of Physicians
• Royal College of Physicians and Surgeons of Glasgow
• Royal College of Physicians of Edinburgh
• Scottish Lipid Forum
• UK Genetic Testing Network
• Wolfson Institute of Preventive Medicine
E-mail addresses of the above stakeholders:
The stakeholder groups will be involved when the recommendation is next reviewed.
If you think your organisation should be added, please
contact us.
More information for stakeholders can be found in appendix C of the UK NSC evidence review process.
Related documents
Evidence summary- familial hypercholesterolaemia (2016) (PDF document, 652KB, 10/12/19)
UK NSC coversheet & consultation responses (2016) (PDF document, 1.65MB, 31/10/20)More options
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