EuroHeart is a collaboration between national registries providing continuous data collection of standardised and/or harmonised variables in common cardiovascular diseases, including therapy, interventions, and devices. Within this structure, the participating registries will be autonomous and fully responsible for their own registry infrastructure, their IT-systems, their databases, and national activities. EuroHeart will also offer participating countries a licensable EuroHeart Registry IT platform for facilitating the set-up in individual countries.
The national registry data will be collected and used for the purpose of quality development in the local health care system. No individual registry data are planned to be transferred outside the country. As such, for most countries, a signed informed consent is not required for the standard data collection. EuroHeart reports on standards of care in different countries will be based on analyses of aggregated data sets originating from synchronised performance of identical analyses in the individual countries.
EuroHeart has been initiated by the ESC. It is based on a collaboration between national registries driven by, or in collaboration with, national cardiac societies. The aim of national registries is to continuously monitor quality of care at the national and local level as a necessary pre-requisite to improving care effectively. EuroHeart is predominantly designed for the benefit of patients, citizens and the planning of health care investments.
In July 2019, the ESC Board approved the launch of a two-year pilot phase of EuroHeart, involving two to four countries, to assess the feasibility of implementation of EuroHeart in different healthcare systems. In 2020, Estonia was the first country to join the pilot.
ESC concluded that there is a need to:
- further develop ESC-generated observational data
- expand the scope of the registry programme to include
- direct quality development
- device monitoring
- registry based randomised trials
January 2021: Romania has been chosen as the second country to pilot EuroHeart
- Covers the common disease areas ACS-PCI, heart failure, valve disease and atrial fibrillation.
- Supports continuous development of quality of care based on individual patient data.
- Starts with development of standardised data sets and quality indicators for diseases and devices.
- Is based on development of and collaboration between national programmes that use common data sets and quality criteria.
- Integrates tools for device surveillance.
- Integrates tools for randomised clinical trials (RRCT).
- Provides an optional common IT-infrastructure.
- Will develop a data science centre localised with options for remote data access.
- Will include representatives from the interested countries in the development and in all subcommittees.
- EuroHeart: An ESC project to develop a new IT registry system which will encompass multiple features of cardiovascular medicine. Read in the European Heart Journal
- ESC methodology for the development of quality indicators for the quantification of cardiovascular care and outcomes. Read in EHF - Quality of Care and Clinical Outcomes.
EuroHeart demo: video
Ongoing project activities
Quality Registry Coordinating Group
Since September 2019, the Quality Registry Coordinating Group has been communicating with more than 15 countries to present the project and to discuss the countries’ willingness and eligibility to participate as pilot countries in the EuroHeart pilot phase. Countries that have already submitted a Pilot Country Evaluation Form are being evaluated.
Please contact firstname.lastname@example.org if you would like your country to participate.
Data Science Group
The Data Science Group has now agreed on the first version of the ACS and PCI datasets. Twenty-two experts from eleven European countries were involved in the development and validation processes. The variables are now being reviewed by the relevant ESC Associations for formal endorsement.
The Data Science Groupwork has started work on the development of the heart failure data variables and definitions following the same methodology. Over the next few months, a comprehensive review of existing heart failure data standards and registries will be undertaken, followed by expert panel reviews.
If your country would like to nominate a representative for the Heart Failure reference group, please contact the team. Representatives would be required to attend two virtual meetings and a review of the proposed variables.
Registry Technology Group
The Registry Technology Group is developing the optional EuroHeart Quality Registry IT-platform that is offered to countries with no quality registries or countries interested in switching to this new platform.
The group will develop the optional EuroHeart Registry IT-platform for continuous monitoring of quality of care, R-RCT, and surveillance of new devices and drugs and support its implementation in the pilot countries.
For more details about the EuroHeart IT-platform and its development, contact email@example.com.
EuroHeart Executive Committee
Co-Chairs: Prof. Barbara Casadei and Prof. Lars Wallentin
Members: Isabel Bardinet, Prof. Chris P Gale, Prof. Aldo Maggioni, Sara Hansson
Project manager: Ebba Bergman