Evidence map›Paper›PMID 42619650›Full record

Observational studyESC heart failure2026

Characterizing clinically recognized hypertrophic cardiomyopathy in six European countries using real-world data.

Marta Alcalde-Herraiz, Antonella Delmestri, Hezekiah Omulo, Elvira Bräuner, Susanne Bruun, Raeleesha Norris, Annika Vivirito, Alexander Harms, Jakov Vuković, Ivan Pristaš and 16 more

Abstract readMulticenter StudyObservational Study
In one paragraph

Observational study in ESC heart failure, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Marta Alcalde-HerraizHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.ORCID 0009-0002-4405-1814
Antonella DelmestriHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.
Hezekiah OmuloHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.
Elvira BräunerData Analytics Center, Danish Medicines Agency, Copenhagen, Denmark.
Susanne BruunData Analytics Center, Danish Medicines Agency, Copenhagen, Denmark.
Raeleesha NorrisData Science/Health Services Research, InGef-Institute for Applied Health Research Berlin GmbH, Berlin, Germany.
Annika ViviritoData Science/Health Services Research, InGef-Institute for Applied Health Research Berlin GmbH, Berlin, Germany.
Alexander HarmsData Science/Health Services Research, InGef-Institute for Applied Health Research Berlin GmbH, Berlin, Germany.
Jakov VukovićMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Ivan PristašMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Anamaria JurčevićMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Marko ČavlinaMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Antea JezidžićMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Pero IvankoMedical Informatics and Biostatistics Division, Croatian National Institute of Public Health, Zagreb, Croatia.
Saeed HayatiPharmacoEpidemiology and Drug Safety Research Group, Department of Pharmacy, and PharmaTox Strategic Research Initiative, University of Oslo, Oslo, Norway.
Nhung T H TrinhPharmacoEpidemiology and Drug Safety Research Group, Department of Pharmacy, and PharmaTox Strategic Research Initiative, University of Oslo, Oslo, Norway.
Hedvig Marie Egeland NordengPharmacoEpidemiology and Drug Safety Research Group, Department of Pharmacy, and PharmaTox Strategic Research Initiative, University of Oslo, Oslo, Norway.
Talita Duarte-SallesUnitat Transversal de Recerca (UTR), Fundació Institut Universitari Per a la Recerca a l'Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain.
Anna Palomar-CrosUnitat Transversal de Recerca (UTR), Fundació Institut Universitari Per a la Recerca a l'Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain.
Agustina GiuliodoriUnitat Transversal de Recerca (UTR), Fundació Institut Universitari Per a la Recerca a l'Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain.
Antonio Gómez-OutesDivision of Pharmacology and Clinical Drug Evaluation, Medicines for Human Use, Spanish Agency for Medicines and Healthcare Products (AEMPS), Madrid, Spain.
Patrick VrijlandtDutch Medicines Evaluation Board, Utrecht, The Netherlands.
María Clara Restrepo-MéndezEuropean Medicines Agency, Amsterdam, The Netherlands.
Edward BurnHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.ORCID 0000-0002-9286-1128
Albert Prats-UribeHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.ORCID 0000-0003-1202-9153
Anna Saura-LázaroHealth Data Sciences, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford, OX3 7LD Oxford, England.

Funding

DARWIN EUPAS1000000430European Medicines Agency
6 · The paper itself

Abstract

BACKGROUND AND

aimsHypertrophic cardiomyopathy (HCM) is the most common inherited cardiomyopathy. However, large-scale epidemiological evidence remains scarce due to challenges in real-world disease recognition. This study aimed to characterize clinically recognized HCM and obstructive HCM (oHCM) across six European countries regarding prevalence, demographics, and clinical characteristics.

methodsWe conducted a retrospective cohort study using routinely collected healthcare data from six European countries, all mapped to the Observational Medical Outcomes Partnership (OMOP) Common Data Model within the DARWIN EU® network: CPRD-GOLD (UK), DK-DHR (Denmark), InGef RDB (Germany), NAJS (Croatia), NLHR (Norway), and SIDIAP (Spain). Clinically recognized HCM was defined based on recorded diagnoses captured in routine healthcare data, rather than on imaging-, haemodynamic-, or genotype-confirmed population screening. Adults (≥18 years) with a first recorded HCM or oHCM diagnosis after 2010 were included. We estimated annual period prevalence and described recorded comorbidities, diagnostic measurements, and treatments before, at, and after diagnosis.

resultsAmong 40 277 individuals with HCM, 12 363 (31%) were first diagnosed with oHCM. Females were older than males at diagnosis (median 67-78 vs 57-68 years). Annual period prevalence increased over time, ranging from 0.04% (95% Confidence interval: 0.04-0.05) to 0.24% (0.23-0.24) in recent years. Prevalence was higher in males, but differences diminished among those aged ≥80 and with oHCM. Cardiovascular comorbidities were frequently recorded before and at the time of first diagnosis, especially hypertension, cardiac arrhythmias, ischaemic heart disease, and heart failure. Beta-blockers, diuretics, and angiotensin-converting enzyme inhibitors were the most common treatments. Most comorbidities and treatments were recorded over a year before HCM diagnosis.

conclusionsAn increase in the prevalence of clinically recognized HCM across Europe was observed over time. This trend is likely multifactorial and may reflect changes in disease recognition, clinical practice, demographics, database-related factors, and potentially the underlying disease burden. Cardiovascular comorbidities and treatments were frequently recorded prior to diagnosis, which may suggest that some patients would benefit from increased diagnostic awareness.

Indexed as

Cardiomyopathy, HypertrophicAdultAgedEuropeFemaleFollow-Up StudiesHumansMaleMiddle AgedPrevalenceRetrospective StudiesEuropeHypertrophic cardiomyopathyObservational studiesObstructive hypertrophic cardiomyopathyPrevalenceReal-world Data

Identifiers

PMID42619650
PMCPMC13639481

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.