About the programme

The Child-Parent Screening Programme is a part of the Health Innovation Network Network Lipid Management and Familial Hypercholesterolaemia national programme and aims to identify families with Familial Hypercholesterolaemia (FH), supporting the NHS Long Term Plan ambition to reduce Cardiovascular Disease (CVD).

The Child-Parent Screening Programme is currently being piloted for 24 months across seven Health Innovation Networks, one of which is the HIWM. Following an evaluation, the aim is to roll out the Child-Parent Screening Service across all 15 Health Innovation Networks.

As part of the Child-Parent Screening Programme, each Health Innovation Network will support GP practices in their region to implement a clinical pathway, which will identify children with FH through a simple heel prick blood test, taken at the child’s routine one year immunisation appointment.

What does Child-Parent Screening involve?

Child-Parent Screening offers a population wide, low-cost solution to the management of CVD and is currently the best model for FH detection.

With parental consent, a child is tested for FH at their routine one year immunisation visit using a Point of Care heel prick capillary test. A small blood sample is taken to measure cholesterol. Evidence shows that age one is when cholesterol measurement discriminates best between individuals with and without FH, whilst screening newborns or adults is less effective.

In those children with a reading below 95 percentile, further genetic testing can be undertaken. If the child receives a diagnosis of FH, at least one of the parents will also be positive. Siblings and second degree relatives can also be counselled, screened and treated as necessary.

Adults identified as having FH will receive statins immediately. Children will be given dietary advice and will be regularly monitored. Statins may then be started at around age 10.

Programme benefits

Child-Parent Screening offers an equitable approach to FH identification and can detect up to 90% of affected people. One study found that for every 1,000 children screened, eight people (four children and four adults) were identified as having FH, and could begin potentially life-saving medication and/or lifestyle and dietary changes.

Without treatment, FH can lead to heart disease at a young age. Identifying affected individuals before the onset of disease is important because treatments can be put in place that promote a healthy, active lifestyle and lower blood cholesterol levels, all of which substantially reduce the risk of heart disease.

Where a child is identified as having FH, parents, siblings and grandparents can also be tested as necessary, potentially identifying full families who have the condition. Age appropriate medication and advice can then be offered to families to reduce the risk of cardiac disease.

Find out more

Get in touch with a member of the project team below to find out how you can get involved.