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Abstract Details

Factors Affecting Minority Enrollment in Parkinson's Disease Genetic Testing
Movement Disorders
P11 - Poster Session 11 (5:30 PM-6:30 PM)
3-002
A systematic review revealed implicit racial bias among healthcare providers affecting patient-provider interactions, treatment decisions, and health outcomes. Such disparities exist in diagnosis, treatment, and research participation for Parkinson’s disease (PD). Minority and female representation in PD clinical trials is less than their population prevalence. 

To investigate the rate of minorities declining participation in the Parkinson’s Foundation genetic study, PD GENEration, and assessed their racial, ethnic, and gender construct as well as their reasons for declining.

Between January 2021 and October 2023, 503 patients from our clinic were screened for enrollment in PD GENEration.  

503 patients were screened, 36% of which were female, 46% were Hispanic. 380 enrolled and 123 declined to participate. 21% of females, 27% of males, 16% of Hispanic patients, and 32% of non-Hispanic patients who were screened declined. 

Of 380 who enrolled, 51% were Hispanic, 38% female; mean age was 67.78 years (±11.27), and 35% had PD family history.   

Of 123 who declined, 30% were female, mean age 70 years (±10.85); 51% were Hispanic, 48% non-Hispanic, 1% unknown ethnicity; 90% white, 8% black, 1% unknown race. Hispanic patients were 3.4, 3.2, and 2.1 times as likely as non-Hispanic patients to list poor health status, insufficient technological knowledge/resources, or poor timing as reasons for declining participation, respectively.  

Females were 6.89 times more likely than males to report lack of study awareness, while males were 2.3 and 5.2 times more likely to list poor health status or poor timing as reasons for declining, respectively.  

With a focus on diverse enrollment, a majority of our enrollees are underrepresented in PD research. Though fewer Hispanic patients declined participation than non-Hispanic patients, reasons for declining differed, warranting further study to investigate and address these inequalities. Diversity in genetic study enrollment will theoretically translate into management considerations more reflective of multicultural populations.   
Authors/Disclosures
Sarah Marmol, MD
PRESENTER
Dr. Marmol has nothing to disclose.
Matthew Feldman, MD (Movement Disorders Fellowship - University of Miami) Dr. Feldman has nothing to disclose.
Lucila Hernandez (University of Miami) No disclosure on file
Silvia Vargas Parra (University of Miami) No disclosure on file
Claudia Cano (University of Miami) No disclosure on file
Danielle S. Shpiner, MD (University of Miami Miller School of Medicine) An immediate family member of Dr. Shpiner has received personal compensation for serving as an employee of University of Miami.
Corneliu C. Luca, MD (University of Miami) Dr. Luca has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Boston Scientific. Dr. Luca has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Signant Health.
Ihtsham Haq, MD, FAAN (University of Miami Miller School of Medicine) The institution of Dr. Haq has received research support from NINDS. The institution of Dr. Haq has received research support from the Parkinson's Foundation. The institution of Dr. Haq has received research support from NIMH. Dr. Haq has a non-compensated relationship as a consultant with Medtronics that is relevant to AAN interests or activities. Dr. Haq has a non-compensated relationship as a consultant with Boston Scientific that is relevant to AAN interests or activities. Dr. Haq has a non-compensated relationship as a consultant with Abbott that is relevant to AAN interests or activities.
Henry P. Moore, MD (University of Miami - Miller School of Medicine) Dr. Moore has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie. Dr. Moore has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Abbvie . Dr. Moore has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Abbvie. Dr. Moore has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ipsen Pharma. The institution of Dr. Moore has received research support from Sage Therapeutics. The institution of Dr. Moore has received research support from Bukwang Pharmaceutical. The institution of Dr. Moore has received research support from Neurocrine. The institution of Dr. Moore has received research support from CDHI Foundation. The institution of Dr. Moore has received research support from MODUS Outcomes LLC.
Carlos Singer, MD (University of Miami) Dr. Singer has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amneal. Dr. Singer has received personal compensation in the range of $10,000-$49,999 for serving as a Video Panel with CNS Ratings LLC. Dr. Singer has received personal compensation in the range of $500-$4,999 for serving as a Course Organiztion with Omniprex Scientific Medical Eduaction. Dr. Singer has received personal compensation in the range of $500-$4,999 for serving as a Reviewer with Health Monitor Network. Dr. Singer has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Movement Disorders Society. Dr. Singer has received personal compensation in the range of $500-$4,999 for serving as a Workshop Moderator with International Neurotoxin Association Inc. Dr. Singer has received personal compensation in the range of $500-$4,999 for serving as a Lecturer with CME Outfitteres LLC.
Jason H. Margolesky, MD (University of Miami School of Medicine) Dr. Margolesky has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion . The institution of Dr. Margolesky has received research support from NeuroNext.