Familial Hypercholesterolaemia: Screening

(asked on 18th March 2021) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure effective, joined up data collection for familial hypercholesterolaemia (FH) across the UK, such as a national FH registry from birth to death, to support the Government’s ambition to identify 25 per cent of people FH in the UK by 2024, as set out in the NHS Long Term Plan.


Answered by
Jo Churchill Portrait
Jo Churchill
Minister of State (Department for Work and Pensions)
This question was answered on 25th March 2021

The NHS Long Term Plan sets the ambition to increase genetic testing and diagnosis of familial hypercholesterolaemia (FH) from 7% to 25% by 2024. To achieve this, the National Health Service will undertake a service evaluation of child-parent cascade screening in seven Academic Health Science Network areas in England. NHS England and NHS Improvement have provided £500,000 to enable this pilot to be implemented. The pilot will be launched in June 2021 and will test over 30,000 children for cholesterol at their one-year vaccination over the next 24 months.

This will support early diagnosis by identifying families with FH before the onset of clinical disease providing an opportunity for prevention with statin therapy and where necessary other lipid lowering drugs. NHS England and NHS Improvement are working with clinicians and patient representatives to inform on a functional FH registry and are investing an additional £335,000 on a single life-long nation-wide database.

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