Current UK NSC recommendations > Familial Hypercholesterolaemia (child)

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
 
Key downloads
 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

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

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)

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. 

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

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

icon Evidence summary- familial hypercholesterolaemia (2016) (PDF document, 652KB, 10/12/19)
icon UK NSC coversheet & consultation responses (2016) (PDF document, 1.65MB, 31/10/20)

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