A pilot screening service for FH

Child-Parent Screening Service (CPSS)

Information for parents


A new pilot screening programme to identify children and their families with FH, a genetic condition that causes very high cholesterol and can lead to heart attacks at an early age. 

What is the CPSS?

The Child-Parent Screening Service (CPSS) aims to identify children and their families with familial hypercholesterolemia (FH). This is to support the NHS Long term ambition to reduce cardiovascular disease (heart disease and stroke), as FH can cause these diseases.

Testing sites have been set up in partnership with the local Academic Health and Science Network (AHSN). These pilot sites aim to screen 30,000 children over the next 24 months with a view to a national roll out across the whole AHSN Network over the following 12 months. 

Who can take part?

If you have a child around the age of 1-2 years who is due their routine immunisations, and your General Practice is involved as a pilot site, you will be invited to have your child screened for familial hypercholesterolaemia (FH).

What does screening involve? 

If you consent, the procedure will take place as follows:

  • When you arrive at the surgery, you will be informed of the CPSS and the lead nurse will ask for your verbal consent.
  • Your child will have a heel prick test, then the blood sample will be analysed. If the child’s cholesterol is raised, the remaining sample will be sent to a genomics laboratory for further genetic testing
  • The genetic testing aims to identify the faulty gene linked with FH. If the test is positive, your child will be offered dietary advice as early as possible, then treatment according to local pathways. The local FH Cascade team will be alerted, because every child with FH will have one parent with the faulty gene, and the parents will also be offered a test. Adults with a positive test for FH will receive statins immediately. Learn about cascade testing to find FH in families.
  • If the initial heel prick test is positive (showing very high cholesterol) but the genetic test is negative, the child will need to be re-tested within 3 months. 

Rebecca's experience

Mum of three, Rebecca McKenzie, talks through her experience of genetic testing for her children and how it's led to the whole family getting on board with their health. 

The initial roll-out of the project has started and the first child was tested on the 20th of October 2021. If you require any further information about the CPSS, please get in touch:

Email: nationalcpsshelpline@ahsn-nenc.org.uk 
Call: 0191 249 641