The Data Infrastructure pillar aims to establish a sustainable infrastructure for accessing and reusing Electronic Health Record (EHR) and registration data from primary care processes to enhance quality and research efforts. This involves three key priorities:
To achieve these objectives, the DCVA enhances research infrastructures by providing access to cardiovascular data and biosamples, offering infrastructure services to streamline research project development and management, promoting sustainable data use through FAIR principles and standardized metadata practices, maintaining a comprehensive catalogue of funded projects to facilitate data access for research purposes, and supporting registry-based research for cost-effective real-world effectiveness studies. These topics are also adressed in the DCVA Leadership Program, were an advisory report was written in 2021 on Registry based randomized clinical trials. In the program that began in June 2023, two groups will focus on data-infrastructure.
Additionally, the DCVA collaborates with Harteraad to develop an online platform empowering cardiovascular patients and fostering community engagement.
Through these efforts, the DCVA aims to strengthen research outcomes in cardiovascular science, ultimately advancing patient care and promoting scientific innovation.
This working group comes together 2x per year to discuss ongoing issues and new collaborations. Partners represented in this working group are: 4TU.Health, Harteraad, Hartstichting, NLHI, NHR, NVvC, VIG, VKGN, WCN, ZonMw. Health-RI is also part of the working group.
Folkert Asselbergs is a clinical cardiologist, Prof of Precision Medicine, and co-lead of the NFU expertise center for inherited cardiac disease at UMC Utrecht. Asselbergs has a joint position as Professor of Precision Medicine at University College London and responsible for the data infrastructure within the DCVA.
