Heart4Data

The main aim of the HEART4DATA consortium is to develop a sustainable infrastructure for cardiovascular registry-based research in the Netherlands including governance and Information Technology (IT) infrastructure, research methods, FAIR (findable, accessible, interoperable and reusable) data creation and data linkage with relevant databases. 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.

Ambitions / goals

The ambition of the HEART4DATA consortium is:

  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 (WP3, 4), technological (WP5) and methodological factors (WP7). 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) (WP3, 8) and links with other relevant national and regional registries and data sources (WP6).
  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).

Hypothesis

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.

Key objectives

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 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.


Main achievements or results from the current project

  • 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.

Meet our team

Daily Board

Name

Function

Folkert Asselbergs

Consortium leader

Dennis van Veghel

Consortium leader

Saskia Houterman

Project manager

Alicia Uijl

Project manager

Fleur Meijers

Project manager

WP leaders

Name

Function

Eelco Soeteman

WP leader Project Management

XXX

WP leader Communication

Jolien Roos-Hesselink

WP leader Organizational governance

Rudolf de Boer

WP leader Organizational governance

Susanne Rebers

WP leader Legal framework & ethics

Dick Schuurman

WP leader IT infrastructure

Andre Dekker

WP leader Data linkage

Michiel Bots

WP leader Data analysis & curation

Ron Pisters

WP leader Sustainability & growth

Sandra van Wijk

WP leader Talent Development

Jasper Brugts

WP leader Observational study (Project A)

Jeroen Schaap

WP leader RB-RCT SELEQT-HF (Project B)

Peter van der Meer

WP leader RB-RCT SELEQT-HF (Project B)

Partners

DCVA partners:

ZonMw

Hartstichting/ Dutch Heart Foundation (DHF)

Nederlandse Hart Registratie (NHR)

Netherlands Heart Institute (NLHI)

Nederlandse Vereniging voor Hart- en Vaatverpleegkundigen (NVHVV)

Werkgroep Cardiologische centra Nederland (WCN)

Nederlandse Vereniging voor Cardiologie (NVVC)

Nederlandse Vereniging voor Thoraxchirurgie (NVT)

Vereniging Innovatieve Geneesmiddelen (VIG)

Harteraad

Nederlandse Federatie van Universitair Medische Centra (NFU)

Other partners:

Registratie commissie HF/AF

Cardialysis

Lygature

HealthRI

Hart- en Vaatcijfers (samenwerking NHR & Hartstichting)

College ter Beoordeling van Geneesmiddelen (CBG)

Zorgverzekeraars NL

Inspectie Gezondheidszorg en Jeugd

Zorginstituut Nederland

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