Call for registry-based research

The Dutch Heart Foundation and ZonMw are investing in a sustainable infrastructure that makes registry-based cardiovascular research possible. For this purpose a new consortium, facilitated by the Dutch CardioVascular Alliance, will be formed.

Registry-based research makes it possible for clinical research to be faster and cheaper. Particularly when studying patient populations that are especially hard to recruit, for example, heart failure patients with comorbidities. The Dutch Heart Foundation and the Rational Pharmacotherapy Program of ZonMw are investing in the development of a sustainable infrastructure for registry-based research, facilitated by the Dutch CardioVascular Alliance (DCVA).

With this project, the Dutch Heart Foundation and ZonMw aim to achieve the following goals:

1. To create a national and sustainable infrastructure for cardiovascular registry-based research, focused on heart failure. This infrastructure includes a framework/structure for the governance, and the ethical, legal, financial and methodological factors. It builds upon the national heart failure registry administrated by the Netherlands Heart Registration (NHR) and links with other relevant (NHR) registries and data sources.

2. To have a proof of concept of the infrastructure by conducting:
- observational, longitudinal research on the whole spectrum of heart failure patients (including patients with a preserved ejection fraction) in the Netherlands
- prospective interventional research on pharmacotherapeutic treatment in chronic heart failure patients, with a focus on multimorbid elderly patients with severe heart failure.

Folkert Asselbergs, initiator of the consortium
“Registry-based research does not only give the possibility to evaluate our current healthcare longitudinally but also gives us the possibility to optimise the execution of randomised research within routine care. Healthcare innovations will be brought to the patient more rapidly, due to the fact that healthcare providers and researchers can evaluate various treatment strategies in relevant patient groups more efficiently and at a lower cost.”

Initiators
The Dutch Heart Foundation and ZonMw appointed two initiators to form a national consortium on registry-based research, in which relevant partners within the DCVA can participate. These initiators will also coordinate the procedure for research application.

  • Dr. Dennis van Veghel, director of the Netherlands Heart Registration;
  • Prof. dr. Folkert W. Asselbergs, professor of cardiology, UMC Utrecht.

Development and testing
Besides developing the infrastructure, the consortium will also conduct several research projects to test its success. These projects are thematically related to improved treatment of patients suffering from heart failure.

Dennis van Veghel, initiator of the consortium
“Through combining and connecting the expertise and experience of the various partners of the DCVA, we can shape an infrastructure for registry-based research. We ensure that quality registrations are well embedded in electronic patient files so that the registration burden remains limited. In this way, we pave the way for new forms of research such as registration-based clinical trials. Based on real world data, we contribute to new insights to further improve patient care.”

Want to join the new consortium?
Are you involved in registration-based research or are you conducting clinical research in the field of heart failure treatments? Do you want to join this new consortium? Read the conditions in the brochure and contact the initiators. The deadline is May 18, 2021.

Email Dennis van Veghel: dennis.van.veghel@nederlandsehartregistratie.nl
Email Folkert Asselbergs: f.w.asselbergs@umcutrecht.nl