The Data Infrastructure pillar works towards a sustainable infrastructure for accessing and reusing Electronic Health Record (EHR) and registry data from routine care, to strengthen both quality of care and research. This involves three key priorities:
To achieve this, the DCVA improves research infrastructures by providing access to cardiovascular data and biosamples, offering services that streamline the development and management of research projects, promoting sustainable data use through the FAIR principles and standardised metadata, maintaining a catalogue of funded projects to facilitate data access, and supporting registry-based research for cost-effective real-world effectiveness studies.
These topics are also addressed in the DCVA Leadership Program. An advisory report on registry-based randomized clinical trials was written in 2021, and in the 2023-2025 programme a group explored what an ideal DCVA Health Data Hub should look like. By mapping the needs of the DCVA partners and advising on how the Hub could best be set up.
Through these efforts, the DCVA strengthens research outcomes in cardiovascular science, ultimately advancing patient care and scientific innovation.
The DCVA Health Data Hub is the expertise centre and infrastructure for registry-based research with real-world care data in the cardiovascular domain. It emerged from the DCVA Heart4Data consortium (2022-2027), funded by the Dutch Heart Foundation and ZonMw, and brings together existing initiatives such as the quality registries of the NHR, the research registries of the Netherlands Heart Institute, and the infrastructure for registry-based research in a transparent, efficient and effective way.
The Hub itself holds no research data. Instead, it connects researchers with the right information, expertise and support: technical facilities, a legal and ethical framework for the responsible reuse of care data, and practical guidance for setting up registry-based studies.
This working group comes together 2x per year to discuss ongoing issues and new collaborations. Partners represented in this working group are: 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.
