Periodic Reporting for period 3 - euCanSHare (An EU-Canada joint infrastructure for next-generation multi-Study Heart research)
Okres sprawozdawczy: 2021-12-01 do 2023-05-31
Despite continuous advances in diagnosis and treatment, cardiovascular diseases (CVDs) remain the main cause of mortality worldwide, accounting for about a third of annual deaths. Furthermore, they greatly reduce the quality of life of cardiovascular patients, who are estimated at a staggering figure of 85 million in Europe alone (CVD Statistics report 2017). CVDs also challenge the financial stability of modern healthcare systems and have a negative impact on economic growth. In this context, researchers are currently in great need of “big data” from population and patient cohorts to extract new knowledge on CVDs, to validate new biomarkers, and to develop new treatments. However, access to data remains a substantial barrier for researchers and innovators, especially in the new regulatory context of the GDPR (Nicholas, M. et al. Information Systems Frontiers, 2019).
For a long time, cardiovascular research had been conducted based on single cohorts such as the well-known Framingham Heart Study. However, single studies are limited to specific populations, geographical areas and even data types. Consequently, multi-cohort approaches have been proposed, both in Europe and in Canada to allow researchers to investigate heterogeneous determinants and biomarkers of CVD in more comprehensive samples, and to uncover new biomedical knowledge with increased sample size, geographical coverage, and data richness. However, these initiatives did not develop the much-needed IT infrastructures to enable the re-use of the data beyond the duration of the funded projects.
The main challenges are: 1) there are no catalogues to enable easy access to information on available data, their precise characteristics and potential for cardiovascular research studies; 2) access request mechanisms remain highly traditional, manual and lengthy, which greatly reduce the efficiency in data-driven biomedical research; 3) re-usability of the data for cardiovascular personalised medicine is often reduced when the funding is terminated; 4) major ethical and legal concerns that need to be addressed to enable responsible data sharing and analysis with a high level of data protection and security.
The main objective of euCanSHare is to build a multi-centre big data platform for cardiovascular research that addresses the challenges listed above. This user-friendly platform will provide several functionalities that will enable easy access to information on available data, that will facilitate the process of requesting and granting access to the data, as well as the process of building data analysis workflows to execute the research studies, while complying to the highest ethical and legal standards of data privacy and security.
For a long time, cardiovascular research had been conducted based on single cohorts such as the well-known Framingham Heart Study. However, single studies are limited to specific populations, geographical areas and even data types. Consequently, multi-cohort approaches have been proposed, both in Europe and in Canada to allow researchers to investigate heterogeneous determinants and biomarkers of CVD in more comprehensive samples, and to uncover new biomedical knowledge with increased sample size, geographical coverage, and data richness. However, these initiatives did not develop the much-needed IT infrastructures to enable the re-use of the data beyond the duration of the funded projects.
The main challenges are: 1) there are no catalogues to enable easy access to information on available data, their precise characteristics and potential for cardiovascular research studies; 2) access request mechanisms remain highly traditional, manual and lengthy, which greatly reduce the efficiency in data-driven biomedical research; 3) re-usability of the data for cardiovascular personalised medicine is often reduced when the funding is terminated; 4) major ethical and legal concerns that need to be addressed to enable responsible data sharing and analysis with a high level of data protection and security.
The main objective of euCanSHare is to build a multi-centre big data platform for cardiovascular research that addresses the challenges listed above. This user-friendly platform will provide several functionalities that will enable easy access to information on available data, that will facilitate the process of requesting and granting access to the data, as well as the process of building data analysis workflows to execute the research studies, while complying to the highest ethical and legal standards of data privacy and security.
The main goal of the third reporting period was to optimise and deploy the final version of the euCanSHare platform after an interactive and continuous feedback gathering from internal and external euCanSHare collaborators, as well as to maximise the dissemination of the project’s platform to the scientific community and general public. This final version of the platform has been released at the very end of the project (M54) and includes an exceptional data catalogue composed by 89,568 variables, 173 datasets and 33 studies, together with a data access interface and analysis tools available at the euCanSHare Virtual Research Environment (VRE). Consecutively, several multi-centre use cases have been implemented to use, validate and enhance the capabilities of the euCanSHare platform, resulting in multiple publications in well-renown peer-reviewed journals. Several guidelines and tutorials on how to generate quality control reports, search for data in the data catalogue, upload data to Opal and Mica and how to link dummy tables to Mica and Opal have been extended and optimised. In addition, a step-by-step video tutorial on how to navigate through the data catalogue is now available under the documentation section of the euCanSHare platform. In this context, a euCanSHare data catalogue workshop was organised at the beginning of August 2022 to fine-tune the data catalogue amongst euCanSHare partners, followed by a Project and Catalogue meeting at mid December 2022 to gather external feedback from cardiovascular researchers and cardiologists. Furthermore, dedicated online meetings were organised to receive the input of experts from the cardiology field via the DataTools4Heart project (GA nº 101057849) regarding the whole euCanSHare project, platform and data catalogue since the latter will be re-used in such follow-up projects. Ultimately, a link to the “euCanSHare Cardiovascular Research Data Catalogue” has been included in the ESC website to further disseminate and promote the outcome of the project at large scale. This is an unprecedented achievement due to the high number of visits that the ESC website receives per year (740,000 visits from June 2022 to June 2023).
euCanSHare is now the first multi-study project to integrate cardiovascular -omics, imaging and clinical data into a unified data infrastructure for enhancing the re-use of data and sustainability beyond euCanSHare. The project will increase trust through state-of-the-art data protection solutions, while providing new incentives for cohorts to join the platform beyond the lifetime of the project. This addresses the current data fragmentation and offers new avenues for personalised medicine research in cardiology. Furthermore, euCanSHare is promoting responsible data sharing in the cardiovascular research field, guided by international principles and policy statements such as the “Framework for Responsible Data Sharing” developed by the Global Alliance for Genomics and Health. Cultural and ethical obstacles to data sharing have been studied through direct interactions with data owners and researchers, which resulted in a set of recommendations to incentivise cohort owners to share more data, distributed to all major medical data platforms in Europe and Canada. The euCanSHare platform also investigated novel solutions, specifically the so-called blockchain as a secure and decentralised access-control manager for the data stored at the various repositories or individual local storage.
The euCanSHare platform is expected to impact cardiovascular research, such as for knowledge, biomarker or drug discovery. The platform will enhance the discoverability of relevant datasets for quantifying and validating new cardiovascular biomarkers (including -omics, imaging and circulating). By nature of this EU-Canada collaboration, euCanSHare also allows uniquely to investigate the impact of ethnicity, environment and genetics in the genesis, diagnosis and treatment potential of complex CVDs. The euCanSHare platform also gathers a new knowledge base for public health and policy making. For CVDs explored in euCanSHare, it is now possible to place their genesis in the context of the complex relationships of the combined effects of environment, lifestyle, genetics, and context on the health of the respective populations. Ultimately, new data-driven innovations and health policies will improve effectiveness and cost efficiency of prevention and treatment of the most prevalent CVDs, which will realise important benefits for citizens, patients, clinicians and healthcare systems.
The euCanSHare platform is expected to impact cardiovascular research, such as for knowledge, biomarker or drug discovery. The platform will enhance the discoverability of relevant datasets for quantifying and validating new cardiovascular biomarkers (including -omics, imaging and circulating). By nature of this EU-Canada collaboration, euCanSHare also allows uniquely to investigate the impact of ethnicity, environment and genetics in the genesis, diagnosis and treatment potential of complex CVDs. The euCanSHare platform also gathers a new knowledge base for public health and policy making. For CVDs explored in euCanSHare, it is now possible to place their genesis in the context of the complex relationships of the combined effects of environment, lifestyle, genetics, and context on the health of the respective populations. Ultimately, new data-driven innovations and health policies will improve effectiveness and cost efficiency of prevention and treatment of the most prevalent CVDs, which will realise important benefits for citizens, patients, clinicians and healthcare systems.