This is an electronic register with annual monitoring of the effects of current and new treatments on growth, puberty, liver function and long-term safety, which will provide comparative audit data, and anonymised data for valid research in the field.
The RCP is no longer involved with the FH Register. For any queries relating to the register please contact HEARTUK email@example.com.
What we are doing
Familial hypercholesterolaemia (also spelt familial hypercholesterolemia) is a genetic disorder characterised by having a high cholesterol level. It is one of the most common inherited conditions and it is estimated that it affects about 1 in 500 people in the UK. Patients with familial hypercholesterolaemia (FH) are at increased risk of premature coronary heart disease.
The FH paediatric register
The register aims to establish how effective current therapies, offered for FH, are in children with the condition. This is an electronic register, with annual monitoring of the effects of current and new treatments on growth, puberty, liver function and long-term safety.
To help doctors and nurses explain FH to patients and their families, HEART UK has produced a short video, called A story of Hope, aimed at children and families where FH is present.
The FH team at the RCP is working with the Royal College of Paediatrics and Child Health, HEARTUK, the BHF and the British Inherited Metabolic Disease Group (BIMDG) to learn more about the ways in which services need to be improved to help reduce the future burden of coronary heart disease for patients with FH.