How many FH patients are currently identified in the UK? What would be needed to identify 50% of the patients within the next 10 years?
PHE ePoster Library. Haralambos K. Sep 12, 2018; 221427; 203
Ms. Kate Haralambos
Ms. Kate Haralambos
Login now to access Regular content available to all registered users.

You may also access this content "anytime, anywhere" with the Free MULTILEARNING App for iOS and Android
Abstract
Rate & Comment (0)
Abstract Background: UK national guidance recommends genetic testing to diagnose monogenic FH patients and subsequent cascade testing (CT) to identify affected relatives. Following a successful pilot in Wales, the British Heart Foundation have supported a UK-wide FH genetic testing programme funding 27 FH nurses across 12 sites. Heart UK have supported a computer system (PASS-clinical) used to register patients and coordinate the testing process. Methods: Data were collected from services covering ~50% of the UK population (~30million) between 2000 and 2018. Diagnoses were mapped by location and time, illustrating the geographical distribution of identified FH cases. Results: To date, 4019 FH index patients and 3930 mutation positive relatives have been identified in this 50% of the UK. The number of relatives tested per index was 6.6 in Northern Ireland, 2.3 in Wales and 1.7 in both Scotland and England. Using a prevalence of 1 in 270, there are ~112,000 FH patients in this 50%, and current services have identified 7% of these (7949). Using data from Bristol, Wessex and Sheffield we estimate that 1 FH nurse diagnoses 70 FH patients per year, and thus, in the 50% of the UK currently covered, ~150 Nurses (approximately 5 nurses per million of population) would be needed to find the rest of the predicted FH patients within 10 years. Conclusion: Improving the number of relatives tested per index case is a key step in improving efficiency of the CT service. When the service becomes nationwide CT will be joined up and far more effective.
    This eLearning portal is powered by:
    This eLearning portal is powered by MULTIEPORTAL
Anonymous User Privacy Preferences

Strictly Necessary Cookies (Always Active)

MULTILEARNING platforms and tools hereinafter referred as “MLG SOFTWARE” are provided to you as pure educational platforms/services requiring cookies to operate. In the case of the MLG SOFTWARE, cookies are essential for the Platform to function properly for the provision of education. If these cookies are disabled, a large subset of the functionality provided by the Platform will either be unavailable or cease to work as expected. The MLG SOFTWARE do not capture non-essential activities such as menu items and listings you click on or pages viewed.


Performance Cookies

Performance cookies are used to analyse how visitors use a website in order to provide a better user experience.


Save Settings