Heterogeneity in cardiac amyloidosis care across Europe: a key opinion leader survey
L Kieviet, L Y Rekker, D Breucker, L M Verheul, M Gallego-Llorente, L Tjon, M von Scheidt, G Pasterkamp, P van der Harst, M I F J OerlemansAbstract
Background
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a form of cardiac amyloidosis characterized by misfolding and subsequent depositions of transthyretin (TTR) in the heart, leading to heart failure. ATTR-CM has recently become a treatable condition with the introduction of disease-modifying therapies (DMT) such as stabilizers, silencers, depleters, and gene therapy. However, access to these therapies and their implementation in clinical practice are still evolving across Europe.
Purpose
The aim of this study was to gain insights into management practices and DMT access for ATTR-CM in European countries.
Methods
A cross-sectional, pan-European survey was conducted among key opinion leaders (KOL) in cardiology covering several cardiac conditions, including cardiac amyloidosis. For this analysis, responses relating to cardiac amyloidosis were extracted. The final survey, conducted between August 2025 and February 2026, captured data on center organization, diagnostic pathways, and therapy access.
Results
In the 11 responding countries, the number of specialized cardiac amyloidosis centers varied widely, ranging from 1 to 20 per country and showing higher concentrations in Western and Northern Europe. Diagnostic pathways for identifying suspected ATTR-CM were available in 90% of centers, primarily at regional or national levels and based on ESC guidelines. Time to initiation of disease-modifying therapy (DMT) ranged from immediate to over 90 days. Across all centers, approximately 25% of patients started therapy within 7 days, 35% within 30 days, and 10–15% experienced delays exceeding 60 days. Regional differences were apparent: Western and Northern European countries (e.g., Netherlands, Sweden, Finland, France, Switzerland) reported shorter median times to treatment (14–30 days), whereas Southern and Eastern European countries (e.g., Italy, Spain, Greece, Poland, Estonia) reported longer median times (45–60 days). No significant correlation was observed between the number of specialized centers and time to DMT initiation (p = 0.65). Therapy availability also varied: stabilizers were widely accessible in routine clinical care, silencer therapies were routinely available in 45% of centers, while depleter- and gene-therapies were used inconsistently, primarily in clinical trials (depleter-therapy: 65%, gene-therapy: 42%).
Conclusion
Variations in ATTR-CM care across Europe highlight key areas for improvement and reveal where interventions could have the greatest impact. Differences in the number of specialized centers, variability in time to treatment initiation, and unequal access to therapies contribute to these disparities. Strengthening care pathways, aligning practices with international guidelines, and increasing awareness among professionals can help close gaps and ensure early diagnosis and access to treatment for all patients with ATTR-CM across the continent.KOL reported CA centers + time to DMT