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

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.

Authors

Institutions

Publication Details

Journal
Heart Failure Reviews
Published
2026-04-15
DOI
https://doi.org/10.1007/s10741-026-10630-6
Primary Topic
Cardiomyopathy and Myosin Studies
Type
article
Field-Weighted Citation Impact
0.00

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Anna Rab, Deddo Moertl, Silvia Charwat‐Resl, Sarah X. Gharibeh et al.
Heart Failure Reviews
Cardiomyopathy and Myosin Studies
article

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

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

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.

Heart Failure ReviewsVol. 31(1)
Sigmund Freud Privatuniversität Wien (AT), Johannes Kepler University of Linz (AT), Danube Private University (AT), Innsbruck Medical University (AT), University of Salzburg (AT), Universität Innsbruck (AT), Medical University of Graz (AT), Rohde & Schwarz (Germany) (DE), University of Applied Sciences St Pölten (AT), Paracelsus Medical University (AT), St. Elizabeth Hospital in Enumclaw (US), Fachhochschule Wiener Neustadt (AT), Ludwig Boltzmann Institute for Cardiovascular Research (AT), Graz University Hospital (AT), Kepler Universitätsklinikum (AT), Tirol Kliniken (AT), Klinikum Wels-Grieskirchen (AT), Krankenhaus der Elisabethinen (AT), Hospital Braga (PT), Karl Landsteiner Society (AT), Medical University of Vienna (AT)
Medizinische Universität Graz
Openalex Percentile: Top 23%
Cardiomyopathy and Myosin Studies
DOIOpen Access PDFOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.