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Updated: Aug 20, 2026

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Published on: September 30, 2025
Census of clinics providing specialist lipid services in the United Kingdom
D Marks1, M Thorogood, J M Farrer
1Public and Environmental Health Research Unit, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT.
Insights
Specialist lipid clinic services in the UK are insufficient for identifying familial hypercholesterolaemia (FH) patients. Limited resources and patchy provision hinder cascade testing, requiring significant investment to improve FH care.
Area of Science:
- Cardiology
- Public Health
- Genetics
Background:
- Family tracing is a cost-effective method for screening familial hypercholesterolaemia (FH).
- Access to index patients via specialist lipid clinics is crucial for successful FH screening programs.
- This study assesses FH patient numbers and specialist lipid clinic availability in the UK.
Purpose of the Study:
- To report on the number of familial hypercholesterolaemia (FH) patients in the UK.
- To evaluate the provision of specialist lipid clinics across the United Kingdom.
Main Methods:
- Survey of specialist lipid clinics in the UK.
- Data collection on clinic staffing, services, and patient numbers.
- Extrapolation of FH patient numbers based on reported data.
Main Results:
- 144 specialist lipid clinics identified, with many understaffed (e.g., 20% lack a nurse).
- Only 24% of clinics have computerized records, limiting data accessibility.
- An estimated 19,794 FH patients are treated in specialist centers, representing only 17% of the predicted number.
Conclusions:
- Specialist lipid clinic provision in the UK is inadequate and unevenly distributed.
- Limited computerized data (less than 10% of predicted FH patients) impedes effective cascade testing.
- Substantial infrastructure investment is necessary for UK specialist lipid clinics to improve FH management.
Background:
Screening for familial hypercholesterolaemia (FH) through family tracing of relatives is cost-effective, but access to the index patient through specialist lipid clinics is a determinant of the programme's success. This paper reports on numbers of FH patients and on specialist lipid clinic provision in the United Kingdom.
Results:
One hundred and forty-four clinics provide specialist lipid services. Over 20 per cent of clinics do not employ a nurse and 64 per cent employ only one doctor. Two thirds treat children. Thirty-four clinics (24 per cent) have computerized records, 58 plan to and 66 clinics were unable to estimate FH numbers. Data from the responding clinics identified 4665 'definite' and 6024 'probable' FH cases. By extrapolation, we estimate there are 19 794 FH patients treated in specialist centres, 17 per cent of the predicted number.
Comment:
Specialist lipid clinic provision is patchy. Less than 10 per cent of the predicted FH patients in the UK are recorded on computerized databases limiting implementation of cascade testing. Substantial investment in the infrastructure of specialist lipid clinics is needed.
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