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Published on: July 24, 2019
Perspectives of People At-Risk on Parkinson's Prevention Research
Jessi L Keavney1, Soania Mathur2, Karlin Schroeder3
1Parkinson's Foundation, Parkinson's Advocates in Research Program, Pendergrass, GA, USA.
Abstract:
The movement toward prevention trials in people at-risk for Parkinson's disease (PD) is rapidly becoming a reality. The authors of this article include a genetically at-risk advocate with the LRRK2 G2019 S variant and two patients with rapid eye movement sleep behavior disorder (RBD), one of whom has now been diagnosed with PD. These authors participated as speakers, panelists, and moderators in the "Planning for Prevention of Parkinson's: A Trial Design Forum" hosted by Massachusetts General Hospital in 2021 and 2022. Other authors include a young onset person with Parkinson's (PwP) and retired family physician, an expert in patient engagement in Parkinson's, and early career and veteran movement disorders clinician researchers. Several themes emerged from the at-risk participant voice concerning the importance of early intervention, the legitimacy of their input in decision-making, and the desire for transparent communication and feedback throughout the entire research study process. Challenges and opportunities in the current environment include lack of awareness among primary care physicians and general neurologists about PD risk, legal and psychological implications of risk disclosure, limited return of individual research study results, and undefined engagement and integration of individuals at-risk into the broader Parkinson's community. Incorporating the perspectives of individuals at-risk as well as those living with PD at this early stage of prevention trial development is crucial to success.
Insights
Patient input is crucial for developing Parkinson's disease (PD) prevention trials. Engaging individuals at-risk and those with PD ensures effective early intervention strategies and transparent research processes.
Area of Science:
- Neuroscience
- Clinical Trials
- Patient Advocacy
Background:
- The development of Parkinson's disease (PD) prevention trials is advancing.
- Individuals at genetic risk (e.g., LRRK2 G2019S variant) and those with prodromal symptoms like REM sleep behavior disorder (RBD) are key populations.
- Patient and advocate voices are increasingly recognized as vital in research design.
Purpose of the Study:
- To outline key considerations for designing Parkinson's disease prevention trials.
- To highlight the importance of incorporating perspectives from individuals at-risk and those living with PD.
- To identify challenges and opportunities in patient engagement for PD prevention research.
Main Methods:
- Convened a "Planning for Prevention of Parkinson's: A Trial Design Forum" with diverse stakeholders.
- Included perspectives from genetically at-risk individuals, patients with RBD, a young-onset person with PD, patient engagement experts, and clinician researchers.
- Synthesized themes from participant discussions regarding early intervention and research processes.
Main Results:
- Individuals at-risk emphasize the need for early intervention and meaningful participation in decision-making.
- Transparent communication and feedback throughout research studies are highly desired.
- Lack of awareness, risk disclosure implications, and limited integration into the PD community are significant challenges.
Conclusions:
- Integrating the perspectives of at-risk individuals and those with PD is essential for successful prevention trial development.
- Addressing awareness gaps among healthcare providers is critical.
- Establishing clear engagement strategies for at-risk populations is necessary for the advancement of PD prevention research.
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