Royal College of Physicians Royal College of Paediatric and Child Health Paediatric FH register British Heart Foundation  Heart UK

                       Welcome to the FH Paediatric Register


The NICE guideline advised that children with FH should be identified before the age of 10, so that treatment could be started as early as possible.  With the rise in children being identified, the aim of  this electronic register is to:

“I have FH, and I am very keen to get my son Cameron, tested too. Cameron is now 7, and if he does have FH I would want his treatment to start at the earliest opportunity. I think it is really important that our UK Doctors in the NHS have access to information that will help us FH families, by making sound decisions about our children. From my point of view, the more information that is available on treating children with FH, the better.”

- Monitor the effects of current and new treatments

- Provide comparative audit data

- Provide anonymised data for valid research in the field

     It is stored on a secure area of the Royal College of Physicians server.  Each clinician is given a username and password to register their patients and store information.  Other users do not have access to this information. 

 If you have been given a username and a password, please log in by clicking on 'Log in' to the left of the screen.  

If you are a clinician who sees children with FH in the UK and would like to know more about the project and registering your paediatric patients, please contact

Please click here to see the FH annual report for 2014. If you would like a hard copy please email

Thank you for your interest. 

Prof Steve Humphries (Lead) 

Dr Uma Ramaswami (Clinical Lead and Metabolic Paediatrician)

Maggie Heinrich (Project Manager)