Heart4Data

A sustainable infrastructure for cardiovascular registry-based research.

The main aim of the Heart4data consortium is 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.

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Talent Program

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Registry-based Studies

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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.

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Ambition / Goals

The ambition & goals of the HEART4DATA consortium are:

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

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.

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


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

Noud de Greef

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

Eric Boersma

WP leader Data analysis & curation

Jasper Brugts

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)

DCVA Partners

The Heart4data consortium is building on the core qualities and experience of DCVA partners. The specific organisations working together in the Heart4Data consortium are:

Other Partners

  • NHR Registration committee HF/AF
  • Cardialysis
  • Lygature
  • HealthRI
  • Hart- en Vaatcijfers (Coöperation NHR & Hartstichting)
  • College ter Beoordeling van Geneesmiddelen (CBG)
  • Zorgverzekeraars NL
  • Inspectie Gezondheidszorg en Jeugd
  • Zorginstituut Nederland
  • All hospitals participating in de workpackages and studies