Objective: To observe the improvement in one tertiary clinical site of the recruitment of underrepresented populations with a focus on the Asian demographic and note which strategies were effective in recruiting and retaining diverse participant populations.

Background: Clinical research has historically underserved diverse racial and ethnic groups. This report comments on whether strategies used to improve recruitment of underrepresented minority populations have resulted in demographics in clinical research trials that are illustrative of the local demographics in the community.

Method: Demographics of patients enrolled in a study at a local research site were compared against the demographics of patients seen at the site and of the population of the counties the site serves. Clinical research staff members observed the strategies this site used to encourage patient rapport and autonomy for the recruitment and retention of diverse populations. The difference in demographics between the accessible diverse population and enrolled patients of these groups was observed and the effectiveness of the strategies used to promote research participation was analyzed.

Results: The Seattle Metropolitan Area census demonstrates that 15% of the population racially identifies as Asian, while the site demographics indicated that 18% of the patients have Asian as their racial identity. Some strategies used at this site include: hiring staff with diverse racial/ethnic identities, considering patient-reported experiences, accounting for cultural/religious diets or restrictions that influence patients’ participation, providing bilingual staff and study materials, adapting the literacy level of documents to be more inclusive, reimbursing for child care and travel, and supplying wifi to help participants access their work during long visits.

Conclusion: To improve the generalizability of the results of clinical trials, it is imperative to include more participants from underrepresented backgrounds. This report identifies effective strategies for increasing participation of underrepresented groups which may be implemented across multiple clinical trial sites.

References: Ison, J. M., Jackson, J. D., Hemley, H., Willis, A., Siddiqi, B., Macklin, E. A., Ulysse, C., Fitts, M. S., Pham, T. T., Afshari, M., Agarwal, P., Aminoff, M., Bissonnette, S., Fullard, M., Khan, T. S., Larson, D. N., Wielinski, C., & Sanchez, A. V. (2024). Fostering inclusivity in research engagement for underrepresented populations in Parkinson’s Disease: the FIRE-UP PD study. Contemporary Clinical Trials, 144, 107619. https://doi.org/10.1016/j.cct.2024.107619

Department of Health and Human Services. (2024, May). Plans and Enrollment Often Fell Short for Underrepresented Groups in a Sample of NIH-Funded Clinical Trials. chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://oig.hhs.gov/documents/evaluation/9900/OEI-01-21-00320.pdf

U.S. Census Bureau. (n.d.). DP1 Profile Of General Population And Housing Characteristics. U.S. Department of Commerce. Retrieved March 15, 2025, https://data.census.gov/table?g=310XX00US42660&d=DEC+Demographic+Profile.

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/observations-and-strategies-for-improving-recruitment-and-retention-of-underrepresented-populations-in-movement-disorders-clinical-research-trials-conducted-in-a-tertiary-research-site/