Data Standard Ecosystem

The European Unified Registries for Heart Care Evaluation and Randomised Trials (EuroHeart) is our flagship initiative for standardising cardiovascular data collection across Europe. It defines structured data standards for major cardiovascular disease domains, including acute coronary syndromes, heart failure and atrial fibrillation, specifying which variables to collect, how to define them and how to use them consistently across registries and countries

Working closely with national cardiac societies and clinical experts, EuroHeart builds harmonised national registries that provide tools and frameworks to monitor outcomes, compare practices, drive sustainable improvements in care and support research and evidence-based decision-making.

The BigData@Heart Innovative Medicines Initiative (IMI) programme laid much of the groundwork for harmonising large-scale cardiovascular datasets. It produced key methodological frameworks, including the CODE-EHR best practice principles for transparent real-world data research, directly influencing EuroHeart standards and shaping later EU projects aimed at aligning cardiovascular data infrastructures.

Funded under Horizon Europe, DataTools4Heart provides the technical infrastructure to operationalise standards. From data ingestion, mapping and cleaning to multilingual clinical natural language processing and privacy-preserving federated learning, the project enables hospitals and countries to align their electronic records with common definitions. DataTools4Heart transforms standards into practice, making harmonised cardiovascular data accessible and actionable.

euCanSHare extends harmonisation beyond registries, connecting cardiovascular cohorts, imaging databases and biobanks across Europe and Canada. Using a secure, GDPR-compliant platform, euCanSHare enables standardised data elements, such as those defined by EuroHeart, to be shared and reused for multi-modal research, fostering collaboration and discovery on an international scale.

The Guidelines for Real-World Evidence Generation (GREG) project ensures that federated analyses of harmonised cardiovascular data meet regulatory and health technology assessment standards. Coordinated in close collaboration with academic partners, GREG complements EuroHeart by providing a robust methodological and ethical framework, supporting the generation of high-quality, actionable real-world evidence across borders.