About the programme
Familial hypercholesterolaemia (FH) is an autosomal dominant genetic disorder causing premature cardiovascular disease due to persistently elevated cholesterol levels. About 1:250 people have FH which significantly increases the risk of a heart attack before the age of 50. Identification of affected individuals before the onset of disease allow for lifestyle modification to be implemented and the initiation of Lipid Lowering Therapies (LLT) which lowers cholesterol thereby reducing the risk of heart disease.
The NHS LTP recognises the importance of timely identification and subsequent management of people with FH and to increase prevalence by 25% over 10 years.
The current approach for identification involves screening GP clinical systems to identify adults with undiagnosed and under- treated FH. However, this strategy alone will not be sufficient to meet the ambitions of the NHS LTP. Child-parent screening has been proposed as a viable mechanism to supplement the traditional model of case findings in adults alone.
The aim is to increase the identification of people with FH from the current 4% to 15% of the prevalent population in England.
Child-parent screening (CPS) is a method of identifying children and their parents with FH and supports cascade testing to identify other relatives with FH. Identified individuals will follow an agreed pathway for referral to WMFHS for specialist input. This will provide a systematic and sustained approach to achieve the NHS LTP target — 15% by March 2023 and 25% by 2025.
We have invited primary care networks (PCNs) and practices to participate in a national service evaluation project.
Child-parent screening involves a heel prick blood test during a child’s routine one-year immunisation appointment, as a method of identifying children and their parents with FH, and to support cascade testing to identify other relatives with FH.
The Health Innovation West Midlands (HIWM), with the support of the West Midlands Familial Hypercholesterolaemia Service (WMFHS), is one of seven Health Innovation Networks participating in this 24-month pilot project — due to complete in October 2023.
More timely diagnosis of FH allows for earlier treatment with lipid lowering therapies, leading to a reduction in premature coronary artery disease and subsequent reduction in cardiovascular events.
Identified individuals will follow an agreed pathway with specialised input through a referral to the WMFHS.
It is unlikely that population screening of adults alone will help attain the target stipulated. The CPS pilot will help to determine whether such a systematic approach can be commissioned in the longer term to support the NHS Long Term Plan ambition to increase population prevalence of FH.
The Child-Parent Screening Programme is a part of the nationally mandated Health Innovation Network, AAC, FH and Lipids Optimisation Programme and aims to identify families with FH supporting the NHS Long Term Plan ambition to reduce Cardiovascular disease.
Find out more
Get in touch with a member of the project team below to find out how you can get involved.