Rare Disease · United States · Competitive Intelligence

ATTR Amyloidosis — US KOL Landscape: The Structure of Clinical Influence

A defensible view of who shapes ATTR-CM and hATTR practice in the United States — mapped as consensus bodies, referral centers, and pivotal-trial author networks, not a scraped list of individuals.

Updated July 2026

Why influence in ATTR is structural, not individual

In transthyretin (ATTR) amyloidosis, clinical influence does not sit with a handful of names — it is organized into a repeatable structure: the guideline and consensus bodies that codify how the disease is diagnosed and treated, the small set of academic centers that concentrate expertise, and the investigator networks that authored the pivotal trials the guidelines cite. A commercial team that maps the structure understands where practice standards are set, where patients are concentrated, and where the evidence base is authored — which is more durable and more defensible than tracking individual physicians.

This page deliberately maps that structure. Where individuals are named, they are named only as the public senior or corresponding authors of the pivotal publications, attributed to the publication and its identifier (PMID/DOI). No contact details, affiliations beyond the public byline, or private information are inferred or listed.

The consensus and guideline bodies that set ATTR practice

US ATTR cardiomyopathy (ATTR-CM) practice is anchored by the American College of Cardiology. The 2023 ACC Expert Consensus Decision Pathway on Comprehensive Multidisciplinary Care for the Patient With Cardiac Amyloidosis (J Am Coll Cardiol 2023;81:1076–1126, DOI 10.1016/j.jacc.2022.11.022) defines the diagnostic algorithm — including the role of technetium pyrophosphate scintigraphy and the exclusion of monoclonal protein before a non-biopsy diagnosis — and the multidisciplinary care model. This was reinforced by the 2025 ACC Concise Clinical Guidance on Transthyretin Cardiac Amyloidosis Evaluation and Management (J Am Coll Cardiol, DOI 10.1016/j.jacc.2025.09.004). The American Heart Association (AHA) and Heart Failure Society of America (HFSA) shape the heart-failure context in which ATTR-CM is now actively screened.

Two bodies govern the field globally and flow into US practice. The International Society of Amyloidosis (ISA) sets the naming conventions the entire literature uses — the 2024 ISA Nomenclature Committee update (Amyloid, DOI 10.1080/13506129.2024.2405948) governs the ATTR, ATTRv (variant/hereditary) and ATTRwt (wild-type) terminology. The World Heart Federation Consensus on Transthyretin Amyloidosis Cardiomyopathy (Brito et al., Global Heart 2023;18(1):59, PMID 37901600, DOI 10.5334/gh.1262) — written by an 18-clinician panel across 13 countries with a patient-advocacy co-author — codifies the international diagnostic and management consensus. Reading these outputs tells you what the field considers standard of care and where it is moving.

The center-of-excellence model concentrates US expertise

ATTR is a low-prevalence, high-complexity disease, so expertise concentrates in a small number of specialized academic amyloidosis programs rather than diffusing across community cardiology. A US survey of specialized amyloidosis centers (Nativi-Nicolau et al., Clinical Medicine Insights: Cardiology 2021, PMID 34104028, DOI 10.1177/11795468211015230) documents this model directly: cardiologists at these centers cited advanced diagnostic capability and staff expertise (47%) and multidisciplinary care and time with patients (33% each) as their defining practices. The consensus recommendation is that patients with known or suspected ATTR-CM be referred to these centers precisely because the disease poses diagnostic and therapeutic challenges community settings are not built to handle.

The practical effect is that a comparatively small set of centers accounts for a disproportionate share of confirmed diagnoses, treatment initiations, registry data, and clinical-trial enrollment. Patient-facing routing reinforces the pattern: the Amyloidosis Research Consortium (ARC), a non-profit, operates My Amyloidosis Pathfinder (MAP) to connect patients to type- and stage-appropriate treatment centers and trials (arci.org). For a commercial team, this means influence is geographically and institutionally concentrated — a structural fact, independent of any individual.

The pivotal-trial investigator structure

The evidence base underpinning every ATTR guideline was authored by a defined set of trials, and the senior/corresponding authors of those publications are the field's public evidence leaders. For ATTR-CM, the landmark ATTR-ACT trial of tafamidis was led by Mathew S. Maurer (Columbia University Irving Medical Center) as first/corresponding author (Maurer et al., N Engl J Med 2018;379:1007–1016, PMID 30145929, DOI 10.1056/NEJMoa1805689). The subsequent ATTRibute-CM trial of acoramidis was led by Julian D. Gillmore (National Amyloidosis Centre, UCL, London) as lead author (Gillmore et al., N Engl J Med 2024;390:132–142, PMID 38197816, DOI 10.1056/NEJMoa2305434), and the HELIOS-B trial of vutrisiran was authored by Marianna Fontana (first author) with Mathew S. Maurer as senior author (Fontana et al., N Engl J Med 2025;392:33–44, PMID 39213194, DOI 10.1056/NEJMoa2409134).

For hereditary ATTR polyneuropathy, the APOLLO trial of patisiran was led by David Adams (CHU Bicêtre, Paris) as first/corresponding author, with Ole B. Suhr as senior author (Adams et al., N Engl J Med 2018;379:11–21, PMID 29972753, DOI 10.1056/NEJMoa1716153). These names are listed strictly as the public authors-of-record of the cited pivotal publications; they map the investigator structure, not a contactable individual database.

Where influence concentrates commercially: the diagnosis gatekeepers

Commercial influence in ATTR-CM concentrates at the point of diagnosis, and diagnosis now runs through cardiology and nuclear imaging rather than tissue biopsy. The keystone is the non-biopsy diagnostic pathway validated by Gillmore et al. (Circulation 2016;133:2404–2412, PMID 27143678, DOI 10.1161/CIRCULATIONAHA.116.021612): a positive Grade 2–3 technetium-99m pyrophosphate (Tc-99m-PYP) bone scintigraphy scan, in the absence of a monoclonal protein, is sufficient to diagnose ATTR-CM without biopsy. This single shift moved the diagnostic gate from hematology/pathology to the cardiologist and the nuclear cardiology lab.

The consequence for influence mapping is direct: the cardiologists who order and interpret Tc-PYP scans, and the heart-failure and echo programs that flag suspicious phenotypes (unexplained left-ventricular wall thickening, discordant low-voltage ECG, carpal tunnel history), are the true gatekeepers of the treated population. The ACC consensus pathway formalizes exactly this workflow. Any structural read of the US ATTR landscape must therefore weight the imaging-and-cardiology diagnosis pathway alongside the academic centers and the guideline bodies — that is where suspected patients are identified, confirmed, and converted into treated patients.

Body / nodeTypeRole in ATTR influenceAnchor output (sourced)
American College of Cardiology (ACC)Professional societyDefines US diagnostic algorithm & multidisciplinary care model2023 Expert Consensus Decision Pathway, JACC 2023;81:1076–1126 (DOI 10.1016/j.jacc.2022.11.022); 2025 Concise Clinical Guidance (DOI 10.1016/j.jacc.2025.09.004)
AHA / HFSAProfessional societiesPosition ATTR-CM within heart-failure screening & scientific statementsCardiac amyloidosis scientific statements; HF guideline context
International Society of Amyloidosis (ISA)Global scientific societyGoverns amyloid nomenclature (ATTR / ATTRv / ATTRwt)ISA Nomenclature 2024, Amyloid (DOI 10.1080/13506129.2024.2405948)
World Heart Federation (WHF)Global federationInternational consensus on ATTR-CM diagnosis & managementBrito et al., Global Heart 2023;18(1):59 (PMID 37901600, DOI 10.5334/gh.1262)
Amyloidosis Research Consortium (ARC)Non-profit / patient orgConcentrates patients toward centers & trials (My Amyloidosis Pathfinder)arci.org
US academic amyloidosis centers of excellenceReferral centersConcentrate diagnosis, treatment initiation, registry & trial enrollmentNativi-Nicolau et al., Clin Med Insights Cardiol 2021 (PMID 34104028, DOI 10.1177/11795468211015230)
Pivotal-trial investigator networkAcademic investigatorsAuthor the evidence base guidelines cite (senior/corresponding authors)ATTR-ACT (PMID 30145929); APOLLO (PMID 29972753); ATTRibute-CM (PMID 38197816); HELIOS-B (PMID 39213194)
Tc-99m-PYP imaging + cardiology pathwayDiagnosis gatekeeperNon-biopsy diagnosis routes control point to cardiology & nuclear imagingGillmore et al., Circulation 2016;133:2404–2412 (PMID 27143678, DOI 10.1161/CIRCULATIONAHA.116.021612)

Sources: ACC/JACC 2023 & 2025; ISA Nomenclature 2024 (Amyloid); WHF Global Heart 2023 (PMID 37901600); Nativi-Nicolau 2021 (PMID 34104028); ATTR-ACT (PMID 30145929); APOLLO (PMID 29972753); ATTRibute-CM (PMID 38197816); HELIOS-B (PMID 39213194); Gillmore 2016 (PMID 27143678); Amyloidosis Research Consortium (arci.org).

Methodology

Frequently asked

Who sets ATTR amyloidosis clinical practice standards in the US?

The American College of Cardiology anchors US practice through its 2023 Expert Consensus Decision Pathway on cardiac amyloidosis (JACC 2023;81:1076–1126) and 2025 Concise Clinical Guidance, alongside the AHA and HFSA. These are informed by International Society of Amyloidosis (ISA) nomenclature and the World Heart Federation's 2023 global ATTR-CM consensus (PMID 37901600).

What is an amyloidosis center of excellence, and why do they matter?

They are specialized, multidisciplinary academic programs to which patients with known or suspected ATTR-CM are referred because diagnosis and management are complex. A US survey (Nativi-Nicolau et al., 2021, PMID 34104028) shows these centers concentrate diagnostic capability, staff expertise, and multidisciplinary care — which is why diagnoses, treatment starts, and trial enrollment cluster in a small number of institutions.

Why is diagnosis the point of commercial influence in ATTR-CM?

Since the non-biopsy pathway was validated (Gillmore et al., Circulation 2016, PMID 27143678), a positive Tc-99m-PYP scintigraphy scan without a monoclonal protein confirms ATTR-CM. This moved the diagnostic gate to cardiologists and nuclear imaging labs, making them the gatekeepers who identify and confirm the treatable population.

Are individual physicians named on this page?

Only the public senior or corresponding authors of the pivotal trial publications are named — e.g., ATTR-ACT (PMID 30145929), APOLLO (PMID 29972753), ATTRibute-CM (PMID 38197816), HELIOS-B (PMID 39213194) — each attributed to its publication. No contact details or private information are listed or inferred.

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