True UK ATTRwt-CM prevalence runs 20,000-40,000. Even after four years of NHS Tc-PYP commissioning, 15,000-36,000 of those patients remain undiagnosed.
The UK ATTR-CM funnel starts with a diagnostic pathway that did not exist before 2021. NHS England established the Tc-PYP scintigraphy commissioning route that year, and roughly 30 NHS scintigraphy centres are now active, producing 2,000-5,000 new ATTR-CM diagnoses a year, up from fewer than 500 a year before Tc-PYP availability. That growth looks fast against its own baseline, but it is small against true prevalence: true UK ATTRwt-CM prevalence is estimated at 20,000-40,000 patients, which leaves 15,000-36,000 undiagnosed even today. NICE's TA696 (2021), updated by TA984 (2024), commissioned tafamidis across NHS England Highly Specialised Cardiology services, and 3,000-4,000 patients are on treatment now, adding 1,500-2,000 a year as the diagnosed pool grows.
A smaller hereditary population sits beside ATTRwt-CM. ATTRv affects an estimated 1,000-2,000 UK patients, of whom roughly 800 are tracked in the UK National ATTRv Registry, led by UCL and Queen Elizabeth Hospital Birmingham. Val30Met is the most common variant, concentrated in Portuguese- and Brazilian-origin families in the UK, alongside Irish Thr60Ala families, and NHS GMS offers free TTR gene panel testing for probands with clinical features. The rate-limiting step across both populations is the same: growing the Tc-PYP referral pathway from NHS echo labs, which today reaches only around 50 of the relevant NHS cardiac centres, ahead of any question about drug access or NICE cost-effectiveness.
UK ATTR amyloidosis funnel — from true prevalence to the NHS-treated pool
| Funnel Stage | Population | Source |
|---|---|---|
| True UK ATTRwt-CM prevalence | 20,000-40,000 | AXLRx ATTR launch-readiness research base (UK) |
| Undiagnosed ATTRwt-CM | 15,000-36,000 | AXLRx ATTR launch-readiness research base (UK) |
| On NHS-commissioned tafamidis today | 3,000-4,000, +1,500-2,000/yr | AXLRx ATTR launch-readiness research base (UK); NICE TA984 |
| New ATTR-CM diagnoses per year since 2021 Tc-PYP pathway | 2,000-5,000/yr | AXLRx ATTR disease-landscape research base (UK) |
| ATTRv (hereditary) patients vs registry-tracked | 1,000-2,000 vs ~800 | AXLRx ATTR disease-landscape research base (UK); UK National ATTRv Registry |
Sources: AXLRx ATTR amyloidosis disease-landscape, competitive-intelligence, payer-HTA, and launch-readiness research base (UK), synthesized for this funnel.
What this model answers
Every section answers a named commercial question your team is asking, scoped to your asset.
Delivers
- True prevalence (20,000-40,000) reconciled against the 3,000-4,000 currently treated
- The 2,000-5,000/yr new-diagnosis rate since 2021 and why 15,000-36,000 patients remain undiagnosed regardless
Delivers
- 1,000-2,000 estimated ATTRv patients vs ~800 registered
- Val30Met and Thr60Ala family clusters; NHS GMS gene panel access
Delivers
- 8-sheet structure (Strategic Context, Inputs, Model, Projections, Sensitivity, References, Market Context, QC)
- Live formulas, zero hardcoded cells; source citation per conversion step across ATTRwt-CM and ATTRv
Custom model delivered in 72 hours.
Commission This ModelWhat's inside
- Why the Tc-PYP referral pathway, not NICE cost-effectiveness, sets the growth rate
- Pressure-tested against the 2021 pre/post-Tc-PYP diagnosis-rate step change before the rest of the model is built out
- 20,000-40,000 true UK ATTRwt-CM prevalence estimate
- 1,000-2,000 estimated ATTRv (hereditary) patients
- 2,000-5,000 new diagnoses per year since 2021, across 30 active NHS scintigraphy centres
- The pre-2021 baseline of under 500 diagnoses per year
- Val30Met and Thr60Ala family clusters within the ATTRv population
- ~800 patients tracked in the UK National ATTRv Registry against an estimated 1,000-2,000 total
- NICE TA984 (tafamidis) and TA1121/TA1115 (acoramidis, vutrisiran) commissioning routes
- England's 90-day funding obligation vs devolved-nation divergence
- Which assumptions move the undiagnosed-to-diagnosed conversion most
- Scenario ranges for Tc-PYP referral-pathway expansion
- Patient volume by horizon under conservative, base, and aggressive scenarios
- Revenue translation inputs by sub-population
- The open questions your forecasting team must close before the model is finalised
- Structured for an internal forecast-review session
Included with every brief
How AXLRx builds this model
Prepared by MoatRx analysts.
Every AXLRx patient flow model is built on a five-layer funnel: population, disease burden (E1), diagnosis and specialist capture (E2), treatment and biomarker eligibility (E3), market access (E4), then Year 1-3-5 projections across three scenarios. Delivered as a live Excel workbook, not a static table, across 8 sheets with zero hardcoded cells.
UK ATTR amyloidosis sources: AXLRx's own disease-landscape, competitive-intelligence, payer-HTA, and launch-readiness research base for the UK market, reconciling NHS Tc-PYP pathway diagnosis rates against true prevalence.
- True UK ATTRwt-CM prevalence and undiagnosed pool verified against the AXLRx UK launch-readiness research base
- NHS-commissioned tafamidis treated population and annual growth verified against the AXLRx UK launch-readiness research base and NICE TA984
- Annual new-diagnosis rate since the 2021 Tc-PYP pathway verified against the AXLRx UK disease-landscape research base
- ATTRv registry-tracked population verified against the AXLRx UK disease-landscape research base and the UK National ATTRv Registry
Frequently asked questions
Commission this model
AXLRx delivers rare-disease patient flow models built for forecasting and launch teams sizing the UK ATTR amyloidosis opportunity across ATTRwt-CM and ATTRv. Custom model in 72 hours.
Specify your indication, market, and cohort definition.
AXLRx analyst confirms funnel scope and comparator set before building.
Research-verified patient flow model in 72 hours with optional analyst readout.