National Child Parent Screening Service Evaluation

The purpose of this PIN is to inform market operators of a potential future exercise to procure services supporting the evaluation of the National Child Parent Screening Service for Familial Hypercholesterolaemia (FH).

Funding was received by Health Innovation North East and North Cumbria in April 2021 to implement and lead on the national Child Parent Screening Programme.

This was in order to support the ambition set out in the NHS Long Term Plan to improve the identification of FH to 25% by 2025.

FH, an autosomal dominant inherited disorder, is a common cause of ischaemic cardiovascular disease in young adult life.

There are about 200,000 undiagnosed people with FH in the UK.

Identifying affected individuals before the onset of disease is important so diet and lifestyle modifications can be made and medication initiated as appropriate.

As each affected child will have one affected parent, testing children provides a means of identifying and treating both child and parent together in a systematic manner.

The child parent screening service will run until the end of October 2024.

There are currently 70 surgeries signed up to participate although not all are screening.

To date (June 2024) there have been 1400 children screened and one diagnosed with genetic FH.

Surgeries are spread across seven of the Health Innovation catchment areas.