Objective: To ascertain study participant impressions of learning their personal research information through a participant portal.

Background: Sharing personal research data with participants in research studies remains uncommon and controversial despite increased calls by participant advocates. The Parkinson’s Progression Markers Initiative (PPMI) is a multinational, longitudinal observational study that collects clinical, imaging, and biologic data from participants with or at risk of Parkinson’s disease (PD) and healthy controls. Our objective is to ascertain PPMI participant impressions of learning personal research data after disclosure.

Method: All participants in the PPMI study in the United States were invited to access their alpha-synuclein seed amplification assay (aSyn-SAA), MDS-UPDRS-III, DaTscan, or University of Pennsylvania Smell Identification Test (UPSIT) research data on the myPPMI participant portal. Educational material was provided, although accessing it was voluntary and self-guided. Participants completed surveys after disclosure pertaining to utility and comprehension of educational content and regret in learning their research data.

Results: 1373 participants enrolled and 1336 (97%) accessed at least 1 research data point (1229 accessed aSyn-SAA, 1233 accessed DaTscan, 1249 accessed MDS-UPDRS-III, and 755 accessed UPSIT. The mean age at the most recent visit was 68.0 (SD 7.5). 51% were male and the mean years of education was 16.8 (SD 2.3). 409 participants completed a survey after aSyn-SAA disclosure, 238 after DaTscan disclosure, 380 after MDS-UPDRS-III disclosure, and 457 after UPSIT disclosure. About 4% (SAA), 19% (DaT), 11% (MDS-UPDRS-III), and 6% (UPSIT) reported poor comprehension of their research information after being offered access to educational content. Among those accessing aSyn-SAA, 66% reported zero regret; an additional 25% reported “mild” regret. Zeroregret was reported more often by those who elected to review the educational material (73% vs 56%). “Moderate” to “severe” regret was only reported by those with a positive aSyn-SAA result.

Conclusion: PPMI participants who accessed their personal research data had a high level of comprehension and a low level of regret afterwards. Ongoing work is evaluating lifestyle impacts of learning personal research data at delayed timepoints. Future clinical research studies should consider disclosure to interested participants.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/sharing-personal-research-data-in-the-ppmi-study-participant-impressions-after-disclosure/