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Abstract Details

Attitudes and Beliefs in Parkinson’s Disease (PD) Research Participation
Movement Disorders
P11 - Poster Session 11 (8:00 AM-9:00 AM)
5-021
To understand barriers to participation in PD-related research.
Only about 10% of people with PD (PwPD) volunteer for research, potentially limiting generalizability of results.
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.

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).


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.
Authors/Disclosures
Prisha Nanda Kumar, Medical Student
PRESENTER 		Ms. Nanda Kumar has nothing to disclose.
Cheryl Meng, MPH Miss Meng has nothing to disclose.
Monica Korell, MPH Ms. Korell has nothing to disclose.
Julien Valverde Twiggs Mr. Valverde Twiggs has nothing to disclose.
Ethan G. Brown, MD (University of California, San Francisco) Dr. Brown has received personal compensation in the range of $0-$499 for serving as a Consultant for Rune Labs, Inc. An immediate family member of Dr. Brown has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. Dr. Brown has received personal compensation in the range of $0-$499 for serving as a Consultant for Guidepoint Inc. An immediate family member of Dr. Brown has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Brown has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for NEJM Knowledge Plus. Dr. Brown has stock in 153 Therapeutics. The institution of Dr. Brown has received research support from Michael J. Fox Foundation. The institution of Dr. Brown has received research support from NIH.
Kathleen Comyns (UCSF) Kathleen Comyns has nothing to disclose.
Xuejie Chen, PhD Dr. Chen has nothing to disclose.
Adrienne L. Clark Ms. Clark has nothing to disclose.
Caroline M. Tanner, MD, PhD, FAAN (University of California San Francisco, Weill Institute for Neurosciences) Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.