Category: Parkinson's Disease (Other)
Objective: To assess the impact of educational events that emphasize research and genetics as well as culturally adapted recruitment strategies on increasing Hispanic participation in the PD GENEration (PD GENE) research study.
Background: Hispanic individuals remain underrepresented in Parkinson’s Disease (PD) genetic research due to various barriers, including limited awareness, language differences, and disparities in healthcare access. To address this gap, in 2024 the PD GENE study initiated a strategic collaboration with the Latin American Research Consortium on the Genetics of Parkinson’s Disease (LARGE-PD) for the study expansion across Latin America, offering CLIA-certified genetic testing and counseling at no cost. This initiative aims to enhance diversity in PD research.
Method: In September 2024, educational outreach events in Mexico and Colombia launched the PD GENE–LARGE-PD collaboration, integrating on-site participant recruitment with educational sessions. These sessions primarily focused on research and genetics while also addressing other relevant topics for the community overall. This effort was supported by the development of culturally tailored Spanish-language educational materials and resources, along with the implementation of an efficient, participant-friendly recruitment workflow. Additionally, dissemination efforts leveraged the PI networks and institutional channels to maximize outreach.
Results: Community outreach events boosted awareness and study enrollment. In Mexico City, 200 attendees (100 with PD) led to 85 participants. In Cali, Colombia, 100 attendees (70 with PD), resulted in 55 enrolled. To strengthen regional engagement, the initiative fostered dynamic partnerships with local institutions, while physicians played a pivotal role in building trust and driving recruitment efforts forward.
Conclusion: Research and genetics educational events, along with culturally adapted recruitment strategies, help reduce barriers, raise awareness, and boost Hispanic participation in PD genetic research. Collaboration with physicians and community leaders builds trust and enhances recruitment. Sustained, community-driven efforts are key to addressing disparities, and future initiatives should focus on ongoing engagement and expanded partnerships to improve representation in PD research.
To cite this abstract in AMA style:
A. Coral-Zambrano, M. Rodriguez Violante, J. Orozco Velez, M. Inca Martinez, I. Mata, P. Hodges, R. de León. The Role of Research and Genetics Educational Events in Parkinson’s Research: Overcoming Barriers in the Hispanic Community [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/the-role-of-research-and-genetics-educational-events-in-parkinsons-research-overcoming-barriers-in-the-hispanic-community/. Accessed October 5, 2025.« Back to 2025 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-role-of-research-and-genetics-educational-events-in-parkinsons-research-overcoming-barriers-in-the-hispanic-community/