Creation and Evaluation of a Research Participant Portal for the University of Chicago Monogenic Diabetes Registry
Authors' conclusion
These findings support the feasibility of research participant portals while highlighting opportunities to improve equitable engagement and functionality.
Study context
- Population
- Participants of the University of Chicago Monogenic Diabetes Registry (UCMDR), a large, longitudinal research study
- Outcome
- Portal uptake and baseline survey completion
Methodological detailsPortal built with the Center for Research Informatics (CRI); integrates with REDCap for secure survey access, document exchange and communication
- Portal built with the Center for Research Informatics (CRI); integrates with REDCap for secure survey access, document exchange and communication
Main finding
As reported in the abstract
- Invited participants who activated portal accounts
- 40%
- New enrollees using the portal who completed baseline survey (historical 60%)
- 88%
- Portal activation higher among female participants
- P < .01
Original publication
Creation and Evaluation of a Research Participant Portal for the University of Chicago Monogenic Diabetes Registry. J Diabetes Sci Technol. Published 11 December 2025. doi:10.
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