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).

This project generates a sustainable infrastructure for cardiovascular registry-based research in the Netherlands using different coherent work packages and participating with many collaborating partners.

• The first hypothesis is that creating an infrastructure for registry-based research, including prospective observational and randomized studies, in cardiovascular care in the Netherlands is feasible.
• The second hypothesis is that guideline adherence regarding heart failure nationwide will improve based on return of routine care data to healthcare professionals and through enabling registry embedded clinical trials optimizing clinical care pathways.

Using the results of this project, healthcare processes could be optimized, innovative research could be conducted, including improving clinical guidelines, resulting in better care and better outcomes for the patient.

A proof of concept of this infrastructure will be tested by conducting two projects within the heart failure registry. The created national consortium will become part of the DCVA community and will actively contribute to the aims of the DCVA. One of the activities is to develop a sustainable governance structure, realizing a DCVA Health Data Hub, and a funding strategy for the maintenance of the infrastructure/future research projects.

The key objective is to create a national and sustainable infrastructure for cardiovascular registry-based research on heart failure. This infrastructure includes a governance structure, and the ethical, legal, financial and methodological framework.

• a sustainable data infrastructure for cardiovascular registry-based research;
• an implemented governance for registry-based research within the DCVA;
• sustainable funding strategies for maintenance of infrastructure / research projects;
• reduce manual data entry across the hospitals by use of routine collected data within the electronic health records of the participating hospitals;
• a procedure for acquiring and storage of informed consent to run registry embedded trials;
• a DCVA Health Data Hub which provides the necessary expertise to relevant stakeholders on (i) legal and ethical framework for all types of registry-based research in the CVD domain – data according to the FAIR principles; and (ii) a collaboration model which provides state-of-art methods for data quality and data analysis;
• feedback possibilities for the treatment of heart failure patients on national, hospital and individual level using (public) dashboards
• successful first proof-of-concept studies using the developed infrastructure.