Objective: To raise awareness about Parkinson’s disease (PD) and PD research in the Hispanic/Latino (H/L) community and increase representation of this group in PD research.

Background: With a population size of 55 million, H/Ls make up 17% of the United States population. Despite being the largest and fastest growing minority group in the US, H/Ls make up only 1% of participants in PD trials. Without adequate representation in research, it is challenging to fully characterize the PD phenotype and determine effectiveness of treatments in this population, which can contribute to health disparities.

Method: This study was part of a larger, multi-center initiative called Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson’s Disease (FIRE-UP PD). Our intervention consisted of the method Boot Camp Translation (BCT), which involves a group of representative community members, a medical expert and co-facilitators. Together, the participants translate information from the medical expert into concepts and messages that are relevant and understandable to the target community. The BCT participants also underwent a PD knowledge test and PD knowledge self-assessment pre- and post-intervention. Thirty-nine members from the target community took surveys pre-intervention and forty took surveys post-intervention to assess engagement and trust in medical research, including the PEIRS (Participant Engagement in Research Scale), TIMRS (Trust in Medical Researchers Scale) and the PD Research Participation survey. We tracked barriers to participation in those screened for the study.

Results: The BCT group crafted messages as educational material in Spanish and English to raise awareness about PD and PD research, including flyers, bookmarks and postcards. These materials will be disseminated throughout the Denver community and through social media. The post-intervention PD knowledge test improved from an average of 82% correct to 95% correct and the PD knowledge self-assessment improved by 54% for the BCT participants post-intervention. The pre- and post-intervention community surveys will be analyzed after final collection in the middle of March. The largest barrier to participation in those interested in the surveys was a language barrier.

Conclusion: BCT engaged community members in a process to improve awareness about PD and PD research in the Denver Hispanic/Latino community.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/engaging-the-denver-hispanic-community-in-parkinsons-disease-research/