Despite continuous advances in diagnosis and treatment, cardiovascular diseases (CVDs) remain the main cause of death worldwide. CVDs account for about 17.9 million annual deaths1 – 31% of all deaths worldwide – and greatly reduce the quality of life of affected patients, challenging the sustainability of modern healthcare systems. In Europe, CVDs are responsible for 30.4% and 25.3% of deaths before the age of 65, in men and women, respectively.2
Many cardiovascular drugs have shown limited efficacy on general populations. Personalised medicine approaches offer solutions to improve risk assessment, early diagnosis and patient-tailored treatment protocols. Data-driven, multi-cohort approaches are needed to link molecular, imaging, functional and clinical data. However, such integration presents a formidable challenge in terms of data storage and access frameworks, interoperability and IT architectures, especially across diverse jurisdictions.
European Society of Cardiology. Cardiovascular Disease Statistics 2017. Eur Heart J 2017; 39(7):508-579.
euCanSHare is a joint EU-Canada project to establish a cross-border data sharing and multi-cohort cardiovascular research platform.
Specifically, the project will integrate data infrastructures, IT solutions and data sources from EU, Canada and other countries into a web-based data access system with functionalities for increased efficiency in cardiovascular data-driven research. euCanSHare integrates more than 35 Canadian and European cohorts making up over 1 million records and actively seeks to expand to other regions.
euCanSHare key objectives are
implement a FAIR (Findable, Accessible, Interoperable and Re-usable) data platform for enhanced data sharing and big data research in cardiology
leverage the power of multi-cohort and multi-omics data in personalised cardiovascular medicine, addressing image analysis and bioinformatics, biomarker identification and quantification, knowledge discovery and risk assessment
apply legal frameworks to enable compliant data sharing across countries in line with Open Science tenets
provide the euCanSHare platform with capabilities to extend over time and thus create the largest network of cohorts and researchers in cardiovascular personalised medicine for academia, companies and public authorities
- Platform design, definition of user requirements and technical specifications
- Delineation of the legal and ethical framework to allow data sharing across EU and Canada
- Preliminary users engagement: definition of incentives to attract participants
- Implementation of platform interfaces and services, including user-designed functionalities, data harmonisation and analysis
- Initial user tests and feedback gathering
Four pilot-test research studies, feedback gathering and system refinements:
- Two research studies on multi-domain risk predictors in cardiovascular disease, integrating imaging, genetics, lifestyle and sex
- One public health study to compare risk estimates across countries and regions
- One industry-relevant study on drug target discovery to adjust commercial platform requirements
- Workshops with hands-on sessions to foster the expansion of the platform with new additional cohorts and users