EuroHeart registry

EuroHeart registry
Name	EuroHeart registry
Type	Clinical registry
Established	2019
Country	European Union
Scope	Cardiovascular disease
Sponsor	European Society of Cardiology

EuroHeart registry is a continental clinical registry initiative coordinated by the European Society of Cardiology to improve quality of care for patients with cardiovascular disease across Europe. It links national and regional registries, registrars, clinical trials, and health systems to standardize outcome measurement, quality indicators, and benchmarking for conditions such as acute coronary syndrome, heart failure, and valvular disease. The program interacts with major cardiovascular stakeholders including professional societies, academic centers, regulatory agencies, and patient organizations.

Overview

EuroHeart provides a harmonized platform for prospective data capture on patients with acute coronary syndrome, heart failure, valvular heart disease, atrial fibrillation, and related cardiovascular conditions. It aligns with international standards promoted by bodies such as the World Health Organization, European Medicines Agency, and Organisation for Economic Co-operation and Development to enable cross-border comparisons, quality improvement, and registry-based randomized trials. The registry interoperates with electronic health records at academic hospitals like Karolinska University Hospital, Charité – Universitätsmedizin Berlin, St Thomas' Hospital, and universities such as University of Oxford, University of Cambridge, KU Leuven, Sapienza University of Rome, and Universität Zürich.

History and Development

EuroHeart was developed following multicenter registry models and initiatives including the Swedish Heart Registry, Myocardial Ischaemia National Audit Project, Get With The Guidelines, GRACE registry, and the VALVEUR registry concept. Early design workshops involved representatives from national societies such as the British Cardiovascular Society, Deutsche Gesellschaft für Kardiologie, Société Française de Cardiologie, and academic networks from Spain, Italy, Sweden, Belgium, Germany, France, Netherlands, Portugal, and Poland. Funding, governance, and technical architecture drew on experience from projects like EuroSCORE, ENTRED cohort, and European research consortia funded under Horizon 2020 and collaborative frameworks with the European Commission.

Governance and Participating Centers

Governance is overseen by steering committees and task forces composed of clinicians affiliated with institutions such as Cleveland Clinic, Mayo Clinic, Guy's and St Thomas' NHS Foundation Trust, and leading European cardiac centers including Hospital Clínic de Barcelona and Institut de Cardiologie de Montréal (collaborative advisors). National cardiovascular societies, regional registries like the Swedish National Board of Health and Welfare datasets, and centers of excellence (e.g., Royal Brompton Hospital, Ospedale San Raffaele, Hôpital Pitié-Salpêtrière) participate. Regulatory and policy interface involves the European Medicines Agency, national competent authorities, and patient advocacy groups like European Heart Network and European Patients' Forum.

Data Collection and Methodology

EuroHeart employs standardized case report forms and common data elements influenced by the International Classification of Diseases coding framework and standards from ISO and Health Level Seven International. Data capture methods include prospective entry at point-of-care, linkage to administrative datasets such as national mortality registries (e.g., Office for National Statistics), and integration with registries like Danish National Patient Registry and Istituto Nazionale di Statistica resources. Methodological approaches apply risk adjustment models derived from studies such as TIMI risk score, GRACE score, and trial datasets from PLATO trial, COURAGE trial, and observational cohorts like the Framingham Heart Study and Atherosclerosis Risk in Communities Study.

Key Findings and Impact

Early EuroHeart analyses have informed practice variation across centers, revealing differences in guideline-recommended therapies comparable to findings from registries like CRUSADE and CathPCI Registry. Reports have focused on process measures (e.g., reperfusion times), outcomes (e.g., 30‑day mortality), and disparities by region, echoing themes from publications in journals such as The Lancet, European Heart Journal, New England Journal of Medicine, and JAMA. Impact areas include informing performance indicators used by national audits, supporting regulatory post‑marketing surveillance akin to procedures by European Medicines Agency, and enabling registry-based randomized trials modeled after TASTE trial and SWEDEHEART studies.

Data Access, Privacy, and Ethics

Data governance follows legal frameworks like the General Data Protection Regulation and ethical guidance from institutional review boards at participating centers including Helsinki University Hospital and Charité – Universitätsmedizin Berlin. Access policies balance scientific use, patient consent, and public health priorities, coordinating with data protection authorities such as the European Data Protection Board. Ethical oversight refers to declarations and principles established by World Medical Association and integrates patient representatives from organizations like European Heart Network.

Future Directions and Initiatives

Planned expansions include linkage to genomic consortia (e.g., 1000 Genomes Project, UK Biobank collaborations), digital health platforms from vendors such as Epic Systems Corporation and Cerner Corporation, and integration with artificial intelligence research consortia including Human Brain Project-adjacent efforts. EuroHeart aims to support pragmatic randomized trials, precision cardiovascular medicine initiatives aligned with Horizon Europe priorities, and collaborations with global registries like NIH-backed programs and the American College of Cardiology registries to enable transatlantic comparisons.

Category:Cardiovascular registries