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
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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.
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