Objective: To evaluate the effect of having a Hispanic, Spanish-speaking research coordinator on recruitment of Hispanic and Latinx people with Parkinson’s disease to the PD GENEration study.

Background: Latinos make up 17% of the U.S. population, but only 7.6% participate in research studies [1]. This number is even smaller, 1.3%, when looking at Hispanic participation in genetic studies specifically for Parkinson’s Disease [2]. Given this data, there is a lack of representation of Hispanics in research which limits the generalizability of findings and the development of targeted therapies. Some factors that contribute to this disparity include language barriers, cultural differences, and mistrust of the medical field [3].

Method: Recruitment to PD GENEration at Columbia University in 2024 was led by a Hispanic, Spanish speaking research coordinator with support from a diversity supplement grant, provided by the Parkinson’s Foundation. This coordinator used targeted recruitment efforts including creating concise flyers in Spanish to provide appropriate engagement with potential participants. Visits were conducted on site and remotely. The number of Hispanic individuals enrolled in 2024 was compared to the enrollment of Hispanic individuals in 2023 when there was no Hispanic research coordinator.

Results: In 2024, 55 of 171 participants (32%) identified as Hispanic/Latinx. In 2023, 11 of 93 participants (12%) identified as Hispanic/Latinx. [Figure 1]

Conclusion: Having a culturally aligned research coordinator in the PD GENEration study proved to be a successful strategy to increase Hispanic enrollment and representation in genetic research for Parkinson’s Disease. We enrolled 5 times as many Hispanic participants compared to the prior year when we did not have a Spanish speaking coordinator.  Many participants expressed appreciation, noting familiarity between the coordinator and a family member. We hypothesize that this level of relatability with the coordinator and availability on site for questions resulted in an increase in a participant’s willingness to participate. Furthermore, it emphasizes the importance of having diverse professionals within research teams to improve accessibility, build trust, and promote equity in clinical and observational studies. Working on similar diversity-focused recruitment efforts can contribute to more inclusive and representative research outcomes, benefiting the broader Parkinson’s Disease community.

Columbia University’s PD GENEration Enrollment

References: 1. Hildebrand JA, Billimek J, Olshansky EF, Sorkin DH, Lee JA, Evangelista LS. Facilitators and barriers to research participation: perspectives of Latinos with type 2 diabetes. European Journal of Cardiovascular Nursing. 2018;17(8):737-741. doi:https://doi.org/10.1177/1474515118780895

2. Loesch DP, Horimoto ARVR, Heilbron K, et al. Characterizing the Genetic Architecture of Parkinson’s Disease in Latinos. Annals of Neurology. 2021;90(3):353-365. doi:https://doi.org/10.1002/ana.26153

3. Dreyfus B, Kuri L, Ferri M, et al. Understanding Hispanic/Latino Participation in Clinical Trials and Observational Studies, and Strategies to Increase Participation: A Targeted Literature Review. Journal of health care for the poor and underserved. 2023;34(1):399-424. doi:https://doi.org/10.1353/hpu.2023.0026

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MDS Abstracts - https://www.mdsabstracts.org/abstract/hispanic-recruitment-to-pd-generation-at-columbia-university/