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

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.