The return of individual results is consistent with the ethical principle that participants have the right to receive data generated from their research participation. Participant input on IRRs may maximize their utility for participants and researchers.

Participants with and without PD from the SUPER-PD study, which evaluates the ability of four optional digital technologies to quantify symptoms of PD, were invited to participate. Following their study visit [in-person and/or remote], participants were emailed their IRR and asked to provide their feedback in a survey. The IRR contained information regarding clinical assessments, patient-reported outcomes, and the digital technologies. The survey asked participants about utility, clarity, and appearance of the IRR and how receiving one may affect their decisions about future study participation. 

Forty-eight SUPER-PD participants have received an IRR and an invitation to provide feedback, and 40 (83%, 22 with PD, 18 without) provided feedback. The majority positively rated the helpfulness (71% overall, 65% with PD, 78% without PD) and comprehensibility (84% overall, 80% with PD, 89% without PD) of the IRR. Many respondents felt the IRR contained insufficient information (33% overall, 45% with PD, 17% without PD). Nearly two thirds (63% overall, 64% with PD, 61% without PD) said the IRR motivates them to continue to participate in SUPER-PD. 73% and 53% reported being more motivated to participate in future observational and interventional research studies, respectively, that provide IRRs.