UK ATTRwt-CM prevalence is estimated at 20,000-40,000, but only 3,000-4,000 patients are on NICE-commissioned tafamidis today, leaving 15,000-36,000 undiagnosed.
Two independent methods size the UK ATTR cardiomyopathy population, and the National Amyloidosis Centre's data anchors both. The epidemiology method estimates true UK ATTRwt-CM prevalence at 20,000 to 40,000 patients, based on the same age-related wild-type mechanism driving the disease elsewhere, adjusted for the UK's demographic profile. The registry method counts confirmed, NHS-commissioned treatment: 3,000 to 4,000 patients are on tafamidis (Vyndaqel) under NICE TA984, the appraisal that updated the original TA696 recommendation, and that treated population is growing 1,500 to 2,000 patients a year as the NHS Tc-PYP scintigraphy referral pathway scales. Triangulating the two methods identifies a gap of 15,000 to 36,000 undiagnosed patients, not a rounding error between two versions of the same number.
That gap has a specific, tractable cause: NHS Tc-PYP nuclear cardiology capacity. Scintigraphy is available at only around 50 of the relevant NHS cardiac centres, and referral runs from HFpEF with increased echo wall thickness through the National Amyloidosis Centre's confirmation pathway before a patient reaches NICE-commissioned treatment. NHS England projects total ATTR-CM spend at £80-120 million a year once roughly 5,000 patients are on treatment, which sets a natural planning ceiling for how fast the diagnosed population, and therefore the addressable market, can grow. Our sensitivity analysis ranks diagnostic referral-pathway capacity above the underlying prevalence estimate as the assumption most likely to move the sized total over the next three years.
UK ATTR sizing — epidemiology-based prevalence versus NICE-registry treated population
| Sizing Method | Population Estimate | Source |
|---|---|---|
| Epidemiology-based (true ATTRwt-CM prevalence) | 20,000-40,000 patients | National Amyloidosis Centre prevalence modelling |
| Registry-based (NICE TA984-commissioned treatment) | 3,000-4,000 patients (+1,500-2,000/yr) | NHS England ATTR-CM commissioning documentation |
| Estimated undiagnosed share | 15,000-36,000 patients | Derived from registry-epidemiology gap |
| NHS peak spend scenario | £80-120M/year at ~5,000 patients | NHS England ATTR-CM service specification 2023 |
Sources: National Amyloidosis Centre annual report; NHS England ATTR-CM service specification 2023; NICE TA984 decision document (updating TA696).
What this model answers
Every section answers a named commercial question your team is asking, scoped to your asset.
Delivers
- Epidemiology-based prevalence methodology
- NICE TA984 registry-based treated-population count
- the 15,000-36,000 undiagnosed gap this implies
Delivers
- NHS Tc-PYP nuclear cardiology capacity (around 50 centres)
- National Amyloidosis Centre referral-pathway mechanics
- growth-rate modelling for the diagnosed population
Delivers
- NHS England's £80-120 million peak ATTR-CM spend projection at ~5,000 patients
- scenario ranges tied to diagnostic-capacity expansion
- sensitivity ranking of every input
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Commission This ModelWhat's inside
- Why NHS diagnostic referral-pathway capacity, not the underlying prevalence estimate, is the assumption most likely to move the total
- Pressure-tested against the registry-versus-epidemiology gap before the rest of the model is built out
- UK ATTRwt-CM prevalence methodology anchored in National Amyloidosis Centre data
- The 20,000-40,000 estimate this implies
- NICE TA984-commissioned tafamidis treated population (3,000-4,000, +1,500-2,000/yr)
- Cross-check against the epidemiology-based estimate
- Where the two methods agree and diverge
- The 15,000-36,000 undiagnosed gap and its diagnostic-capacity explanation
- Diagnostic referral-pathway capacity ranked above prevalence estimate as the binding assumption
- Scenario ranges tied to NHS Tc-PYP centre-capacity expansion
- The full triangulated model, re-runnable with your own assumptions
- The open sizing questions your team must close before the number is used in NHS budget planning
Included with every brief
How AXLRx builds this model
Prepared by MoatRx analysts.
Every AXLRx market sizing model triangulates at least two independent methods, epidemiology-based and registry-based, before accepting a patient count. This is a sizing model, a static patient count, distinct from a Patient Flow or forecasting model that models dynamic revenue and uptake.
UK ATTR sizing sources: the National Amyloidosis Centre annual report, NHS England's ATTR-CM service specification 2023, and the NICE TA984 decision document updating TA696.
- Epidemiology-based UK ATTRwt-CM prevalence estimate verified against National Amyloidosis Centre prevalence modelling
- NICE TA984-commissioned treated-population count and annual growth rate verified against NHS England ATTR-CM service specification 2023
- NHS peak spend projection verified against NHS England ATTR-CM service specification 2023
Frequently asked questions
Commission this model
AXLRx delivers rare disease market sizing models built for forecasting and strategy teams sizing the UK ATTR amyloidosis opportunity. Custom model in 72 hours.
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