Rare Disease · United States · In-Market

US ATTR Amyloidosis Disease Landscape

The ATTR-CM vs ATTR-PN split, the wild-type/hereditary divide, and why Tc-PYP scintigraphy, not biopsy, is now the diagnostic gate for a largely undiagnosed population.

~100,000–150,000 US ATTR-CM (est.)~80% wild-type / ~20% hereditaryTc-PYP scintigraphy diagnosisUpdated Q2 2026
Market United States United Kingdom GCC (Gulf) Stage
The Landscape

ATTR amyloidosis is two diseases, cardiomyopathy and polyneuropathy, and most of its estimated 100,000–150,000 US cardiomyopathy patients remain undiagnosed.

Transthyretin (TTR) amyloidosis arises when TTR tetramers dissociate and misfold into amyloid fibrils that deposit in tissue. It presents as two distinct diseases. ATTR cardiomyopathy (ATTR-CM), driven by amyloid deposition in the myocardium, is the larger commercial market; ATTR polyneuropathy (ATTR-PN), driven by peripheral-nerve deposition, is the historically nerve-led population. ATTR-CM is further split by genotype: wild-type disease (ATTRwt, age-related, roughly 80% of ATTR-CM) predominates in men over 70, while hereditary disease (ATTRv, roughly 20%) is driven by a pathogenic TTR variant — of which V122I (Val122Ile) is the most common in the US and disproportionately affects people of West African ancestry. Estimates place the US ATTR-CM population at roughly 100,000–150,000, but the majority remain undiagnosed.

The defining feature of the landscape is diagnostic, not therapeutic. Technetium-pyrophosphate (Tc-PYP) scintigraphy, validated by Gillmore and colleagues, now allows a non-biopsy diagnosis of ATTR-CM (Gillmore grade 2–3 with a monoclonal protein excluded) — replacing endomyocardial biopsy as the diagnostic gate. Echocardiographic clues (increased wall thickness, granular sparkling, apical-sparing longitudinal strain) are the front-door screen, and ATTR-CM is increasingly recognised as an under-diagnosed cause of heart failure with preserved ejection fraction and of severe aortic stenosis. Because tafamidis reduced all-cause mortality by 29.5% at 30 months in ATTR-ACT and two oral stabilizers plus three RNA silencers are now approved, the rate-limiting step for the market is finding patients, not treating them.

~100–150K
Estimated US ATTR-CM patients — the majority undiagnosed · ATTR epidemiology estimates
~80% / ~20%
Wild-type (ATTRwt) vs hereditary (ATTRv) split of ATTR cardiomyopathy (est.)
−29.5%
tafamidis relative reduction in all-cause mortality at 30 months, ATTR-ACT · NEJM 2018 (PMID 30145929)
DISEASE SPECTRUM

ATTR amyloidosis spectrum — phenotype, genotype, and treatment implication

SubtypeShare (US est.)Defining FeatureKey Clinical BurdenTreatment Implication
ATTRwt-CM (wild-type, age-related)~80% of ATTR-CMAge-related TTR misfolding; men >70; no pathogenic variantHFpEF, association with severe aortic stenosis, carpal tunnel, spinal stenosisTc-PYP scintigraphy diagnosis; oral TTR stabilizer (tafamidis / acoramidis)
ATTRv-CM (hereditary)~20% of ATTR-CMPathogenic TTR variant — V122I most common in the USEarlier onset; often mixed cardiac and neuropathic diseaseTTR genetic testing; stabilizer, with RNA silencers relevant where neuropathy present
ATTRv-PN (hereditary polyneuropathy)Variant-driven (e.g. V30M)Peripheral-nerve amyloid depositionProgressive sensorimotor and autonomic neuropathy; disabilityRNA silencer (patisiran / vutrisiran) or antisense (inotersen)
Undiagnosed ATTR-CM poolMajority of estimated prevalent patientsAttributed to HFpEF, hypertensive, or age-related heart failureUnder-recognition; progression before diagnosisScintigraphy screening from echo red flags is the diagnostic-expansion lever

Sources: Gillmore JD et al. Circulation 2016 (PMID 27143678); ATTR-ACT, NEJM 2018 (PMID 30145929); APOLLO, NEJM 2018 (PMID 29972753); HELIOS-A, Amyloid 2022 (PMID 35875890); FDA Drugs@FDA; ATTR epidemiology estimates (triangulated).

Commercial Questions

What this assessment answers

Every section answers a named commercial question your team is asking, scoped to your asset.

01
How large is the undiagnosed US ATTR-CM pool, and where does Tc-PYP scintigraphy screening expand the diagnosed population?

Delivers

  • Diagnostic funnel from estimated to diagnosed prevalence
  • scintigraphy referral and uptake
  • HFpEF and aortic-stenosis screening yield
  • the addressable diagnosed population
02
How do the ATTR-CM vs ATTR-PN split and the wild-type vs hereditary divide segment the US patient population?

Delivers

  • Phenotype and genotype segmentation
  • TTR genetic testing
  • the hereditary V122I cohort
  • the mixed cardiac-plus-neuropathic phenotype
03
Which patients sit in the oral-stabilizer vs. RNA-silencer treatment pathway, and how is that likely to shift?

Delivers

  • Treatment mapping by phenotype and indication
  • oral stabilizers in ATTR-CM vs RNA silencers in ATTR-PN
  • the implications of vutrisiran's cardiomyopathy filing

Custom assessment delivered in 72 hours.

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Contents

What's inside

Rare Disease · 24–32 pp · In-Market · Analyst report + Excel model + PowerPoint readout

1 Misfolded TTR Tetramers Deposit as Amyloid Fibrils, Producing Two Distinct ATTR Diseases 4 pp
  • Why dissociating TTR tetramers that misfold into amyloid fibrils produce two distinct diseases: cardiomyopathy and polyneuropathy.
  • How ATTR-CM's myocardial deposition and ATTR-PN's peripheral-nerve deposition split one misfolding protein into two markets.
2 US ATTR-CM Affects an Estimated 100,000–150,000 Patients, ~80% Wild-Type 5 pp
  • Why the estimated 100,000-to-150,000 US ATTR-CM population is roughly 80% wild-type disease in men over 70.
  • How the majority of this 100,000-to-150,000 pool remains undiagnosed despite three approved TTR-targeted therapy classes.
3 V122I Drives the Most Common US Hereditary ATTR Variant, ~20% of ATTR-CM Cases 4 pp
  • Why V122I, the most common US hereditary TTR variant, accounts for roughly 20% of ATTR-CM cases.
  • How hereditary ATTRv-CM patients carrying V122I often present with earlier onset and mixed cardiac-neuropathic disease.
4 Tc-PYP Scintigraphy Replaces Biopsy as the Diagnostic Gate for a Majority-Undiagnosed Population 5 pp
  • Why Tc-PYP scintigraphy, validated by Gillmore et al., now enables non-biopsy diagnosis of ATTR-CM at grade 2-3.
  • How echo red flags like apical-sparing strain and granular sparkling route HFpEF patients toward scintigraphy screening.
5 Tafamidis Cuts All-Cause Mortality 29.5% at 30 Months in ATTR-CM 4 pp
  • Why tafamidis's 29.5% relative reduction in all-cause mortality at 30 months in ATTR-ACT redefined ATTR-CM treatment.
  • How two oral stabilizers and three RNA silencers now approved make diagnosis, not treatment, the market's rate-limiting step.
6 V122I Disproportionately Affects Patients of West African Ancestry in Hereditary ATTR-CM 4 pp
  • Why V122I, the most common US hereditary ATTR variant, disproportionately affects patients of West African ancestry.
  • How this ancestry-linked variant concentration shapes which US patient subgroups warrant targeted TTR genetic testing.
Appendix and source ledger included · 45-minute analyst readout included with delivery
Formats

Included with every brief

PDF
PDF Brief
ATTR Amyloidosis Disease Landscape — US Complete Edition
25–30 page disease landscape assessment: US ATTR epidemiology, ATTR-CM vs ATTR-PN phenotypes, the diagnostic pathway, and the undiagnosed pool.
XLS
Excel Model
Patient Flow Model — Excel
ATTR patient funnel: US prevalence estimate, diagnosis rate, wild-type vs hereditary split, ATTR-CM vs ATTR-PN segmentation, and treatment-eligible population.
PPT
PowerPoint
Executive Readout — PowerPoint
12–15 slide readout deck for commercial team presentations, formatted to AXLRx design standards.
Methodology

How AXLRx builds this assessment

Prepared by MoatRx analysts.

Every AXLRx assessment is built from primary regulatory sources (FDA Drugs@FDA, ClinicalTrials.gov), peer-reviewed literature, and live payer and HTA documentation — not secondary summaries, market-research reports, or unverified estimates. Findings are independently verified before inclusion; if a figure cannot be sourced to a live record, it does not ship.

US ATTR Amyloidosis Disease Landscape sources: FDA Drugs@FDA (approval status and indications), the non-biopsy diagnostic criteria of Gillmore JD et al. (Circulation 2016, PMID 27143678), and primary trial publications for the approved therapies — ATTR-ACT (NEJM 2018, PMID 30145929), APOLLO (NEJM 2018, PMID 29972753) and HELIOS-A (Amyloid 2022, PMID 35875890). Prevalence and the wild-type/hereditary split are presented as triangulated estimates.

  • Non-biopsy Tc-PYP scintigraphy diagnostic pathway verified against Gillmore JD et al. Circulation 2016 (PMID 27143678)
  • Tafamidis ATTR-CM mortality benefit verified against ATTR-ACT, NEJM 2018 (PMID 30145929)
  • ATTR-PN RNA-silencer efficacy verified against APOLLO (PMID 29972753) and HELIOS-A (PMID 35875890)
  • Approval status and indications verified against FDA Drugs@FDA
FAQ

Frequently asked questions

Epidemiology
How many people have ATTR amyloidosis in the US, and how many are diagnosed?
Estimates place the US ATTR cardiomyopathy (ATTR-CM) population at roughly 100,000–150,000, with the majority still undiagnosed. Wild-type disease (ATTRwt, age-related) accounts for roughly 80% of ATTR-CM and hereditary disease (ATTRv) for roughly 20%; ATTR polyneuropathy (ATTR-PN) is a separate, hereditary-driven population. These figures are triangulated estimates, and the gap between estimated and diagnosed prevalence is the defining feature of the landscape.
Diagnosis
How is ATTR-CM diagnosed without a biopsy?
Technetium-pyrophosphate (Tc-PYP) scintigraphy, validated by Gillmore and colleagues (Circulation 2016), allows a non-biopsy diagnosis of ATTR-CM when cardiac uptake is Gillmore grade 2–3 and a monoclonal protein is excluded — replacing endomyocardial biopsy as the diagnostic gate. Echocardiographic clues such as increased wall thickness and apical-sparing strain are the front-door screen that triggers scintigraphy.
Deliverables
What formats are included with every assessment?
Every commissioned assessment includes three deliverables: a 20–30 page PDF analyst assessment with verified sources and exhibit tables, an editable Excel model, and a 10–15 slide PowerPoint readout deck. An optional 60-minute analyst readout call is included with all deliveries.
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1
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2
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