2025 American Academy of Neurology Abstract Website

Prisha Nanda Kumar¹, Cheryl Meng², Monica Korell², Julien Valdeverde Twiggs³, Ethan Brown⁴, Kathleen Comyns⁵, Sue Xuejie Chen², Adrienne Clark², Caroline Tanner⁶
¹Philadelphia College of Osteopathic Medicine, ²University of California San Francisco, ³San Francisco Department of Public Health, San Francisco, CA, ⁴University of California, San Francisco, ⁵UCSF, ⁶University of California San Francisco, Weill Institute for Neurosciences

Objective:

To understand barriers to participation in PD-related research.

Background:

Only about 10% of people with PD (PwPD) volunteer for research, potentially limiting generalizability of results.

Design/Methods:

Participants in the online Fox Insight (https://foxinsight.michaeljfox.org/) study completed a survey regarding research participation. Results are reported for PwPD and people without PD (PwoPD), overall and stratified by age and sex, and in PwoPD in a subgroup reporting features suggestive of prodromal PD.

Results:

4,505 PwPD (49% women, mean age 68) and 1829 PwoPD (77% women, mean age 62) responded. Of PwoPD, 910 (50%) had a first-degree relative with PD.

More than 99% of both PwPD and PwoPD indicated interest in participating in other research activities. Completing online surveys (90% PwPD, 94% PwoPD), giving blood (78%PwPD, 81%PwoPD) or saliva (81% PwPD, 84%PwoPD), and participating in telemedicine evaluations (76% PwPD, 79%PwoPD) were endorsed by most. PwPD were more willing to engage in medication trials (60%) compared to PwoPD (40%).

Barriers to research participation were identified by 78% in both groups. Distance from home to the research facility was a major concern for both PwPD (57%) and PwoPD (56%). Other concerns varied across groups. Transportation was a greater concern for PwPD (31% PwPD, 18% of PwoPD). PwoPD were more concerned than those with PD about privacy of information (20% PwoPD, 13% PwPD) and the time required to participate in research activities (33% PwoPD, 26% PwPD).

Conclusions:

While individuals with and without PD in this online research study demonstrate a strong willingness to participate in other research activities, concerns such as transportation, time commitment, and complexity of research instructions remain significant barriers. Addressing these concerns may enhance research participation.