The UK NSC recommendation on Familial hypercholesterolaemia screening in children

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Screening is not recommended because:

• there are no studies that help understand how well a childhood screening strategy works in practice

• no studies have been identified that assessed whether child screening reduces illness or death from FH

• there remain unanswered questions about the acceptability of universal screening at 1-2 years

More about Familial Hypercholesterolaemia (child)

Familial hypercholesterolaemia (FH) is a condition where the body has a high amount of a fatty substance called cholesterol. The build-up and hardening of these fatty substances can block blood from being supplied to the heart and other areas of the body. This causes heart disease leading to serious illness and can cause death.

FH is passed on to those affected at birth through altered genes from either mother or father and in some cases through both. People with FH have a 1 in 2 chance of passing on the condition to their children. Around 1
in 500 people are thought to have FH in the UK and similar countries. Only an estimated 1 in 10 of those with FH in the UK are aware they have the condition.

Without the right healthcare people with FH are more likely to develop types of heart disease at an early age. NICE clinical guidance on the identification and managementof FH (CG71) recommend that treatment with lipid-modifying therapy should usually be considered by 10 years of age, and would be lifelong. 

» Read more about hyperlipidaemia on the Contact a Family website

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 Living with Inherited Metabolic Diseases
• Children's Heart Federation
• Circulation Foundation
• Faculty of Public Health
• Genetic Alliance UK
• HEART UK
• Institute of Child Health
• 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 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.

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