Improving identification of FH in primary care (FAMCAT)
Research type
Research Study
Full title
Improving identification of familial hypercholesterolaemia in primary care using a new case ascertainment tool (FAMCAT)
IRAS ID
213043
Contact name
Nadeem Qureshi
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
2 years, 5 months, 28 days
Research summary
Familial Hypercholesterolaemia (FH) is one of the most common causes of very high cholesterol levels that runs in families and can affect every generation. If a person has too much cholesterol, it makes blood vessel walls narrower increasing risk of heart disease by the time the affected individuals reaches 40 years old. However, 80% of 120,000 affected people are still not diagnosed.
Our previous study showed the current approach to identify FH in general practice, recommended by national (NICE) guidelines, does not find many affected people whilst referring others to specialists who do not have the condition. This is an inefficient way to use limited NHS resources and also causes unnecessary concerns for unaffected people referred to specialists.
We have developed software that combines information from General Practice records on cholesterol levels, family history and other illnesses to produce a score on the likelihood that a person has FH. Based on this score, appropriate people would be offered further assessment by their General Practitioner. Several NHS trusts are very keen to use this software but it needs to be formally evaluated first.
To show that the new approach, using this software in General Practice computers, is more effective than the current approach, we need to confirm how many people that the software ranks as having the highest score (or risk) do actually have FH. This involves offering these people a genetic test. In addition, we will collect information from general practice and hospital records on the impact of using software, to confirm that this is better value for money than the current approach. We will also invite some patients, general practitioners and practice staff to feedback on how we can improve the software and follow-up. Based on all of this information we will prepare a full trial to evaluate the software.REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
16/EM/0461
Date of REC Opinion
23 Jan 2017
REC opinion
Further Information Favourable Opinion