Creation and Evaluation of a Research Participant Portal for the University of Chicago Monogenic Diabetes Registry

The University of Chicago Monogenic Diabetes Registry (UCMDR) developed a participant portal to enhance engagement and data completeness in a large, longitudinal research study. Built in collaboration with the Center for Research Informatics (CRI), the portal integrates with REDCap to provide secure survey access, document exchange, and communication. Since its launch, 40% of invited participants have activated accounts. Among new enrollees, 88% of portal users completed their baseline survey, up from a historical 60%. Portal activation was higher among female participants (<i>P</i> < .01), with no significant differences by age or income. Overall portal feature use was modest, possibly reflecting lower adoption among historical participants accustomed to legacy processes. These findings support the feasibility of research participant portals while highlighting opportunities to improve equitable engagement and functionality.