Registry-based randomized controlled trials are defined as pragmatic trials that use registries as a platform for case records, data collection, randomization, and follow-up. The application of registry-based randomized controlled trials has attracted increasing attention in health research to address comparative effectiveness research questions in real-world settings. When compared with conventional randomized effectiveness trials, the advantages of registry-based randomized controlled trials include low cost, enhanced generalizability of findings, rapid consecutive enrolment, and the potential completeness of follow-up for the reference population.
A prerequisite for registry-based research is a good (technical) infrastructure to make this valuable data available for scientific research. This can be achieved by facilitating data extraction from the EPDs, investing in data standards and FAIR data and defining the legal possibilities with regard to access and link data sources.
The DCVA is working on a roadmap to develop a plan to stimulate and facilitate registry-based research. In addition, the DCVA wants to set up a call to finance registry-based research. The roadmap is expected in October 2020.