Royal College of Physicians Royal College of Paediatric and Child Health Paediatric FH register British Heart Foundation  Heart UK
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Familial Hypercholesterolaemia (FH)  Paediatric Register

The aims of the register are to:

  • Monitor the safety and efficacy current and new treatments for FH on children, in particular growth, puberty and liver function.
  • Provide comparative audit data for this relatively rare condition where individual clinicians see few patients
  • Provide valid data for future research in this field.  including, , for example, whether there a difference in the degree of adult atherosclerosis (eg. at the age of 18) between children that started statins early and those who did not, and whether there a higher subsequent incidence of cancers if statins are started before the age of 10.

The NICE guideline  advises that children with FH should be identified before the age of 10, so that treatment can be considered as early as possible.The project takes the opportunity of this increase in the number of children with FH being identified to establish an electronic register of these children, as recommended by NICE. 

The project will also provide a model for a national web-based electronic register of FH, which will become necessary to link regional centres to allow cascade testing across their boundaries. In addition, it allows the identification of clinics caring for children. Given the absolute numbers in any one centre are likely to be small, clinical research will require a collaborative network of sites, and the register would provide a means of identifying sites that might be prepared to participate in such a network. A clinical lead has been employed on the project and it is anticipated that there will be the opportunity to contribute to research and publications.