Objective: To recognize the barriers of participating in PD research with qualitative and quantitative data.

Background: Women, minorities, and people over 70 years of age are underrepresented in clinical research trials due to the lack of recruitment and implicit biases. Although federally funded agencies are required to recruit for diverse representation in research studies, there remains a knowledge gap.

Method: We analyzed demographics, clinical history, clinical trial experiences and theoretical clinical trials, such as a prodromal pre-diagnosis trial, longitudinal observational cohort, and a phase 3 neuroprotective trial. Inclusion criteria will be individuals diagnosed with Parkinson’s disease by a neurologist, 50 years or older, who must sign an informed consent and are willing to complete the survey. Exclusion criteria will be those unable to provide support or are currently hospitalized.

Results: 17 people completed the survey at Grady Hospital in Atlanta, Georgia. Of the 17 PD patients who completed the study 12 self-identified as African American/Black (75%), 3 self-identified as White (18.8%) and 1 American Indian/Pacific Islander (6.3%). 100% of the participants were never asked to participate in a PD research trial. 93.8% (n=15) had never been asked to participate in research. Of the prodromal pre-diagnosis trial, 50% (n=8) were willing to participate and 25% (n=4) were neutral. For the longitudinal observational cohort trial 37.5% (n=6) were willing to participate and 31.3% (n = 5) were neutral. When asked about their interest in participating in a phase 3 neuroprotective trial 37.5% (n = 6) were willing to participate and 12.5% (n=2) were neutral.

Conclusion: 93.8% of the participants were never asked to be involved in PD research trials in the past. All the participants completed their first PD study and at least half agreed to participate in various clinical research trials based on the scenarios. 75% of the cohort self identified as African American or Black, emphasizing that minority groups are simply not asked to participate as readily as their White counterparts. Furthermore, it will be worthwhile to conduct a study that aims to investigate the various reasons that generate this disparity from the perspective of the providers that care for this cohort.

References: 1. Daisy Le, Hanna Ozbeki, Stefanie Salazar, Madison Berl, Monique Mitchell Turner, Olga Acosta Price, Improving African American women’s engagement in clinical research: A systematic review of barriers to participation in clinical trials, Journal of the National Medical Association, Volume 114, Issue 3, 2022, Pages 324-339, ISSN 0027-9684, https://doi.org/10.1016/j.jnma.2022.02.004. (https://www.sciencedirect.com/science/article/pii/S0027968422000384)
2. Denson AC, Mahipal A. Participation of the Elderly Population in Clinical Trials: Barriers and Solutions. Cancer Control. 2014;21(3):209-214. doi:10.1177/107327481402100305
3. Meghan Coakley, Emmanuel Olutayo Fadiran, L. Jo Parrish, Rachel A. Griffith, Eleanor Weiss, and Christine Carter.Dialogues on Diversifying Clinical Trials: Successful Strategies for Engaging Women and Minorities in Clinical Trials.Journal of Women’s Health.Jul 2012.713-716.http://doi.org/10.1089/jwh.2012.3733
4. Luebbert, Rebecca, and Amelia Perez. “Barriers to Clinical Research Participation among African Americans.” Journal of Transcultural Nursing, vol. 27, no. 5, 2016, pp. 456–463., https://doi.org/10.1177/1043659615575578.
5. Travonia B. Hughes, PhD, Vijay R. Varma, PhD, Corinne Pettigrew, PhD, Marilyn S. Albert, PhD, African Americans and Clinical Research: Evidence Concerning Barriers and Facilitators to Participation and Recruitment Recommendations, The Gerontologist, Volume 57, Issue 2, 1 April 2017, Pages 348–358, https://doi.org/10.1093/geront/gnv118

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MDS Abstracts - https://www.mdsabstracts.org/abstract/why-me-why-not-understanding-the-perception-of-research-among-african-americans-with-pd/