National Child Parent Screening Service Evaluation

Funding was received by Health Innovation North East and North Cumbria (HI NENC) 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 Familial Hypercholesterolaemia (FH) to 25% by 2025.

Previously, HI NENC had embarked on a programme of work to search primary care records for those at risk of FH. Alone this was unlikely to achieve the NHS LTP ambition - the addition of a child-parent screening (CPS) programme was introduced to help increase identification of FH patients and their families.

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.

This project aims to evaluate the effectiveness of the implementation of the child parent screening service as well as the impact it has had. A mixed methods approach will be used drawing on a variety of techniques.