Objective: To understand perceptions and expectations of people with prodromal Parkinson’s disease (PD) around receiving personal research information.

Background: There is limited information on the perspectives of people at risk for Parkinson’s around receiving personal research information. The Parkinson’s Progression Markers Initiative (PPMI) is a global, longitudinal observational study that collects clinical, imaging and biologic data from participants with and at risk of PD. PPMI is sharing personal research information (dopamine transporter imaging, alpha-synuclein seed amplification assay, MDS-UPDRS Part III) with participants through its centralized myPPMI web-based participant portal.

Method: PD clinician-researchers from the PPMI Steering Committee developed participant-facing educational materials to be made available before and after voluntary research information disclosure. The educational content was reviewed by key stakeholders, including participants. After reviewing the materials, 7 prodromal PPMI participants — 2 with REM sleep behavior disorder (RBD), 2 with hyposmia and 3 with a PD genetic variant — participated in a focus group led by experienced PPMI study team members. With participant consent, audio and video recording were conducted. The study team used the transcript to perform a qualitative data analysis and identify key themes.

Results: Prodromal participants wanted access to their research information but also wanted guidance on how to interpret and act on the information. Participants agreed the information should be shared in a digestible way and that use of visuals would be beneficial. They expressed interest in discussing their research information both with their PPMI site investigator and their personal doctor. The conversation included consideration for how the data may impact care decisions and lifestyle choices. One participant asked if they would be required to disclose their personal research information when applying for insurance.

Conclusion: The focus group identified opportunities to improve content and delivery of personal research information in PPMI. While PPMI is not providing research data directly to personal doctors, these participants’ desire for such shows a need for broader discussion with clinicians on interpreting research data and for providing supportive services such as counseling.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/gathering-prodromal-participant-perspective-on-receiving-personal-research-information/