Cookies on this website

We use cookies to ensure that we give you the best experience on our website. If you click 'Accept all cookies' we'll assume that you are happy to receive all cookies and you won't see this message again. If you click 'Reject all non-essential cookies' only necessary cookies providing core functionality such as security, network management, and accessibility will be enabled. Click 'Find out more' for information on how to change your cookie settings.

  • 1 April 2020 to 31 January 2021
  • Project No: 478
  • Funding round: FR19

Familial hypercholesterolemia (FH) is the most common inherited cause of raised cholesterol, affecting 1 in 270 people in the UK. It leads to premature heart disease and death if untreated. Unfortunately, the majority of people with FH remain undiagnosed. A recent study by our research team found that even with a diagnosis of FH in primary care, individuals had a 2-fold higher risk of heart disease than the general population of people without FH.

While there is a pressing need to improve FH awareness and diagnosis among clinicians, no research has explored whether there is a difference in treatment and health outcomes between patients with FH in primary care and those under specialist management. It is unknown whether FH patients under specialist management receive more rigorous management and interventions, and if these interventions have an impact on future health outcomes and mortality.

To address this important evidence and research gap, the proposed research aims to assess the treatment and health outcomes of patients with FH in primary care in comparison with patients in a specialist FH disease register. We will use a large database of computerised primary care records, linked to hospital records, to identify patients with FH in primary care. Patients under specialist management will be identified from the Simon-Broome FH specialist register. The Simon-Broome register contains records of patients with FH registered in 21 lipid clinics in the UK, which has now been linked to hospital records. These two groups of patients will be compared and assessed in terms of differences in treatment interventions, heart disease and mortality outcomes.

Findings from this research should provide evidence of any inconsistency in FH management, as well as significant gaps in health outcomes related to FH in patients who are more intensively managed compared to those who might not be. 


Stephen Weng, Nadeem Qureshi, Joe Kai (Nottingham)


Amount awarded: £12 901.15

Projects by themes

We have grouped projects under the five SPCR themes in this document

Evidence synthesis working group

The collaboration will be conducting 18 high impact systematic reviews, under four workstreams.