CA is a progressive infiltrative heart muscle disease, caused by the accumulation of insoluble amyloid fibrils in the heart muscle (myocardium). The resulting cardiomyopathy eventually progresses to end-stage heart failure. Life expectancy without access to specialised treatment is poor.
This project is aimed at supporting, via a collaborative working agreement between the NHS Highland Cardiac Unit, Raigmore Hospital Inverness and Pfizer, the delivery of a clinical nurse for 6-months. The objective of this project is to discover how many patients, who have already presented with breathlessness/suspected heart failure, to their general practitioner actually have cardiac amyloidosis (CA) that is currently missed by the current clinical pathway. The cases of patients with suspected CA will be reviewed by a consultant cardiologist. Further investigations will be requested including haematological investigations (serum & urine electrophoresis and serum light free chains) and DPD nuclear scans. Some patients may need clinic review. All suitable patients with a diagnosis of CA will be initiated on approved licensed therapies.
The project will run over a total of 6 months:
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Developing and coordinating the clinical pathways to review and optimise patients referred by general practice with suggestive symptoms of heart failure and raised NT-pro-BNP >400ng/L.
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To incorporate an initial review of patient records from all referrals with NT pro terminal BNP >400ng/L and echocardiogram data.
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This will be followed by a period to cross reference with potential red flags for CA.
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The third stage will be a diagnostic work-up and if positive for CA initiation of approved licensed treatments in suitable patients.
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Finally, a suggested pathway for future referrals will be produced.
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Development of systematic screening and cross-referencing of red flags for patients referred into the Cardiac Unit.
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Accelerating initiation of appropriate licensed treatments for those patients diagnosed with all forms of cardiac amyloidosis under the guidance of an expert clinician.
To discover how many patients who have already presented with breathlessness have CA that is currently missed by the current clinical pathway.
To develop a suggested pathway for future referrals therefore improving awareness and clinical pathways in Inverness for amyloidosis patients to potentially expand to the wider NHS.
Planned start date: 4th August 2025.
Planned end date: 2nd February 2026.
NHS Highland will contribute:
Diagnostic funding support: £48,660.00
Human resource support: 312 hours (£18,720.00)
Pfizer UK Ltd will contribute:
Clinical Nurse Resource funding: £45,000.00
Human resource: 90 hours (£4,050.00)