The eCG Family Clinic

Registry-based research enables faster and cheaper clinical research by using real world data. This is particularly important in patient populations where research is otherwise difficult to conduct, such as heart failure patients with comorbidities. The main aim of the Heart4data consortium is therefore to develop a sustainable infrastructure for cardiovascular registry-based research in the Netherlands. This includes governance and Information Technology (IT) infrastructure, research methods, FAIR (findable, accessible, interoperable and reusable) data creation and data linkage with relevant databases.     About Heart4Data  The Heart4Data consortium is building on the core qualities and experience of DCVA partners. Heart4Data will create a DCVA Health Data Hub that will be part of the DCVA pillar Data Infrastructure to combine all expertises across the different DCVA partners as part of the sustainability program.    In addition, Heart4Data will contribute to improvement of valorisation and implementation through accelerating the generation of results and facilitate DCVA consortia by providing a platform for research at lower operational costs compared to more traditional research methods.    The Research 1. To create a national and sustainable FAIR data-based infrastructure for cardiovascular registry-based research.  The infrastructure includes a framework/structure for the governance, and the ethical, legal, financial, technological and methodological factors. There will be a special focus on heart failure in this project by creating a sustainable heart failure (and atrial fibrillation (AF)) registry in the Netherlands Heart Registration (NHR) and links with other relevant national and regional registries and data sources.    2. To use and prove value of the infrastructure by conducting two projects:    - Observational, longitudinal research on the entire spectrum of patients with heart failure (including patients with HFpEF) in the Netherlands (project A) with focus on guideline recommended diagnostic trajectories and treatment.  - Prospective randomized clinical research on pharmaco-therapeutic treatment in patients with chronic heart failure (project B: SELEQT-HF).  The origin One of the five top priorities named on the cardiovascular disease research agenda that the Dutch Heart Foundation set in 2014 was finding better treatment for heart failure and arrhythmias. Back in 2014, when the research agenda was drawn up, it became clear that registry-based research is essential for this. The Dutch Heart Foundation therefore funded this study as part of the collaboration with the ZonMw GGG program on Good Use of Medicines (Goed Gebruik Geneesmiddelen). For a complex project such as this, collaboration within the entire cardiovascular field is an important starting point. The consortium is a collaboration between several DCVA partners; the Dutch Heart Foundation, ZonMw, NHR, WCN, Harteraad, NLHI, NVHVV, NVT, NVVC, VIG and Health-RI.  

Promoting a healthy lifestyle and maintaining it for a long time is crucial for the prevention of cardiovascular diseases. Lifestyle change areonly sustainable and impactful if it takes into account the context in which it occurs. The research Therefore, this netwerk will disseminate this insight widely to policymakers, researchers and everyone who contributes to promoting healthy behaviors. In this way, we can collectively achieve greater health gains when implementing potentially successful interventions. The ultimate goal is to achieve sustainable and impactful lifestyle change in the population. In the projects LIKE, BENEFIT and SUPREME NUDGE, unique expertise has been gained in the field of (1) embedding lifestyle interventions in complex systems, and (2) changing systems underlying lifestyle behavior. Within this national network, we want to disseminate and embed this expertise among researchers, practice professionals and policy makers. We will combine this expertise in the form of two toolboxes; a toolbox for practice professionals and policy makers and a toolbox for researchers. To this end, existing tools will be adapted, where necessary, to make them more widely usable. We aim to embed the toolboxes in (existing) structures and will make the toolboxes findable and disseminated through this netwerk. This network will serve as a structure for connections between stakeholders and contribute to the realization of a sustainable knowledge infrastructure. With this project we identify and create important conditions for successful further development and upscaling of innovative and sustainable ways to sustain healthy living for longer. With this we go further than many existing networks and knowledge infrastructures that focus only on 'effective interventions' but not on the structural embedding in systems or addressing the systems themselves. The origin From 2017, the Dutch Heart Foundation, together with ZonMw, invested in research by three healthy living consortia (LIKE, BENEFIT and SUPREME NUDGE). The common goal was to find new ways to achieve sustainable and impactful lifestyle change in the population. Heart Foundation and ZonMw asked the three healthy living consortia Supreme Nudge, LIKE and Benefit to join forces within this theme by using the knowledge they have gained over the past few years. Although the three consortia each had a different approach, the research leaders agreed on what is needed for lifestyle change to be truly successful: a shift in thinking about lifestyle change. Subsequently, the Dutch Heart Foundation and ZonMw provided follow-up funding to join forces and acquired knowledge in a new knowledge infrastructure.