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The prospective Austrian hypertrophic cardiomyopathy registry - design, methods and results of the run-in period

  • Viktoria Santner
  • , Christina Granitz
  • , Martin R Grübler
  • , Daniel Dalos
  • , Christian Reiter
  • , Marc-Michael Zaruba
  • , Johann Auer
  • , Deddo Moertl
  • , Anna Rab
  • , Peter P Rainer
  • , Gert Waltl
  • , Christian Ebner
  • , Thomas Weber
  • , Diana Bonderman
  • , Stephan Dobner
  • , Hannah Tuppinger
  • , Viktoria Höller
  • , Nora Schwegel
  • , Klemens Ablasser
  • , Andreas Zirlik
  • Amelie Graf, Sarah Gharibeh, Johannes Lanzerstorfer, Katharina Wörgötter, Christopher Mann, Shehroz Masood, Christy Meledeth, Clemens Steinwender, Andre Logtenberg, Moritz Messner, Carina Primus, Pia Auersperg, Lydia Mackova, Christof Baurecht, Susanne Winkler, Stephanie Schneiderbauer-Porod, Kathrin Danninger, Silvia Charwat-Resl, Paul Harbich, Rene Krenn, Nicolas Verheyen

Research output: Journal article (peer-reviewed)Journal article

Abstract

The diagnosis and management of hypertrophic cardiomyopathy (HCM) is increasingly complex, and systematic evidence remains sparse. The Austrian HCM registry aims to provide representative real-world data addressing gaps in evidence. Here, we report design, methods and results after one year enrolment. The Austrian HCM Registry is an ongoing prospective, multicenter registry including University and community hospitals across Austria. Patients with written informed consent undergo a structured assessment of symptoms, past medical history, family history and the presence of HCM-specific red flags. Clinical data derived from electrocardiogram, echocardiography, laboratory analysis, and genetic testing are collected and entered into a web-based, responsive electronic case report form. Bilateral data transfer agreements ensure legal protection of each site. Between March 2024 and May 2025, 7 University centers and 7 community hospitals from 6 out of 9 Austrian federal states were initiated. Overall, recruitment rate was 2.5 patients per site and month, with University centers and community hospitals contributing 92% and 8%. Among 303 enrolled participants, median age was 60 (25th, 75th percentile; 50, 68), 44% were women. Echocardiography, cardiac magnetic resonance imaging and genetic testing were available in 99%, 86% and 60%, respectively. In this first year, participating sites of the Austrian HCM Registry achieved a consistent and fast recruitment rate. Data availability is high and cohort characteristics align well with other registries. The Austrian HCM Registry will serve as a robust research platform providing contemporary real-world data on epidemiology, diagnosis and management of HCM in a Central European country. ClinicalTrials.gov identifier. NCT06368518.

Original languageEnglish
Article number56
JournalHeart Failure Reviews
Volume31
Issue number1
DOIs
Publication statusPublished - Dec 2026

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