The register aims to establish how effective current therapies, offered for FH, are in children with the condition.
The RCP is no longer involved with the FH Register. For any queries relating to the register please contact HEARTUK paediatricfh@heartuk.org.uk.
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.
Clinicians who see paediatric patients with FH are encouraged to add them, subject to consent, to the register via the attached forms.
Once patients are enrolled they are eligible for free DNA testing by the Cardiovascular Genetics Research Laboratory at UCL, which is funded by the British Heart Foundation (BHF).