DARWIN EU® Characterizing Clinically Recognized Hypertrophic Cardiomyopathy in Six European Countries: A Descriptive Analysis Using Real-World Data
Author(s)
Anna Saura-Lazaro, PhD1, Marta Alcalde-Herraiz, BSc1, Edward Burn, PhD1, Antonella Delmestri, PhD1, Hezekiah Omulo, BSc1, Møldrup Claus, PhD2, Elvira Bräuner3, Susanne Bruun3, Josephine Jacob4, Raeleesha Norris, PhD4, Annika Vivirito, PhD4, Alexander Harms, PhD4, Jakov Vukovic5, Ivan Pristaš5, Anamaria Jurcevic, PhD5, Marko Cavlina, PhD5, Antea Jezidžic De, PhD5, Pero Ivanko, PhD5, Saeed Hayati, PhD6, Nhung TH Trinh, PhD6, Hedvig Nordeng, PhD6, Talita Duarte-Salles, PhD7, Anna Palomar Cros, PhD7, Agustina Giuliodori, PhD7, Albert Prats-Uribe, PhD1.
1University of Oxford, Oxford, United Kingdom, 2Danish Medicines Agency, Copenhagen, Denmark, 3Danish Medicines Agency, Denmark, 4InGef - Institut für angewandte Gesundheitsforschung GmbH, Berlin, Germany, 5Croatian Institute of Public Health, Zagreb, Croatia, 6University of Oslo, Oslo, Norway, 7Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAP Jordi Gol), Barcelona, Spain.
1University of Oxford, Oxford, United Kingdom, 2Danish Medicines Agency, Copenhagen, Denmark, 3Danish Medicines Agency, Denmark, 4InGef - Institut für angewandte Gesundheitsforschung GmbH, Berlin, Germany, 5Croatian Institute of Public Health, Zagreb, Croatia, 6University of Oslo, Oslo, Norway, 7Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAP Jordi Gol), Barcelona, Spain.
OBJECTIVES: This study aimed to describe clinically recognised hypertrophic cardiomyopathy (HCM) and obstructive HCM (oHCM) in terms of prevalence, demographics, and clinical characteristics across multiple European countries.
METHODS: We conducted a retrospective cohort study using routinely collected healthcare data sources from six European countries: CPRD-GOLD (UK), DK-DHR (Denmark), InGef RDB (Germany), NAJS (Croatia), NLHR (Norway), and SIDIAP (Spain). Data were mapped to the OMOP Common Data Model and integrated into the DARWIN EU® network, funded by the European Medicines Agency. Individuals ≥18 years with a first recorded diagnosis of HCM or oHCM between 2010 and 2023 were included. We estimated annual period prevalence and described the frequency of predefined comorbidities, diagnostic tests, and treatments recorded before, at, and after diagnosis, stratified by age and sex. The median time from the first record of each variable to HCM diagnosis was also estimated.
RESULTS: Over 40,200 individuals with HCM were identified, with oHCM cases ranging from 21% (SIDIAP) to 60% (CPRD-GOLD). Women were consistently older than men at diagnosis, with median ages of 67-78 years versus 57-68 years. HCM prevalence increased over time across all databases, reaching 0.04% (CPRD-GOLD) to 0.24% (SIDIAP) in 2023. Prevalence of oHCM followed a similar but lower trend, ranging from 0.03% (CPRD-GOLD) to 0.07% (NLHR). HCM prevalence was higher in men, though sex differences were less marked in those aged ≥80. The most common comorbidities included essential hypertension, arrhythmia, ischaemic heart disease, and heart failure, with valvular heart disease more frequent in oHCM. Beta-blockers, diuretics, and angiotensin-converting enzyme inhibitors were the most frequently prescribed treatments. Most comorbidities and treatments were firstly recorded over a year before HCM diagnosis.
CONCLUSIONS: HCM prevalence varied across data sources but consistently increased over time. The frequent recording of cardiac comorbidities and treatments before diagnosis highlights the need for earlier disease recognition.
METHODS: We conducted a retrospective cohort study using routinely collected healthcare data sources from six European countries: CPRD-GOLD (UK), DK-DHR (Denmark), InGef RDB (Germany), NAJS (Croatia), NLHR (Norway), and SIDIAP (Spain). Data were mapped to the OMOP Common Data Model and integrated into the DARWIN EU® network, funded by the European Medicines Agency. Individuals ≥18 years with a first recorded diagnosis of HCM or oHCM between 2010 and 2023 were included. We estimated annual period prevalence and described the frequency of predefined comorbidities, diagnostic tests, and treatments recorded before, at, and after diagnosis, stratified by age and sex. The median time from the first record of each variable to HCM diagnosis was also estimated.
RESULTS: Over 40,200 individuals with HCM were identified, with oHCM cases ranging from 21% (SIDIAP) to 60% (CPRD-GOLD). Women were consistently older than men at diagnosis, with median ages of 67-78 years versus 57-68 years. HCM prevalence increased over time across all databases, reaching 0.04% (CPRD-GOLD) to 0.24% (SIDIAP) in 2023. Prevalence of oHCM followed a similar but lower trend, ranging from 0.03% (CPRD-GOLD) to 0.07% (NLHR). HCM prevalence was higher in men, though sex differences were less marked in those aged ≥80. The most common comorbidities included essential hypertension, arrhythmia, ischaemic heart disease, and heart failure, with valvular heart disease more frequent in oHCM. Beta-blockers, diuretics, and angiotensin-converting enzyme inhibitors were the most frequently prescribed treatments. Most comorbidities and treatments were firstly recorded over a year before HCM diagnosis.
CONCLUSIONS: HCM prevalence varied across data sources but consistently increased over time. The frequent recording of cardiac comorbidities and treatments before diagnosis highlights the need for earlier disease recognition.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
RWD48
Topic
Epidemiology & Public Health, Real World Data & Information Systems, Study Approaches
Topic Subcategory
Distributed Data & Research Networks
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory), No Additional Disease & Conditions/Specialized Treatment Areas, Rare & Orphan Diseases