Improving Recruitment of Underrepresented Groups in the PD GENEration Study
Rebecca Jules1, Monika Szela1, Karen Williams1, Sonia Lopez1, Jared Solis1, Carla Aranda1, William Morgan1, Niccolo Mencacci1, Danielle Larson1, Paulina Gonzalez Latapi1
1Neurology, Northwestern University
Objective:
Improving recruitment of underrepresented groups in the PD GENEration study
Background:

As of 2023, Illinois’s population included 1.9 million individuals (15.3%) who identified as Black/African American and 2.4 million (19%) who identified as Hispanic/Latino.¹ Despite representing a significant portion of the state’s demographics, these groups remain underrepresented in clinical research, including Parkinson’s disease (PD) studies due to barriers such as limited access to specialized care, insufficient understanding of clinical trial risks and benefits, and inadequate accommodations for non-English speakers.² We developed a model at the Northwestern Medicine Parkinson’s Disease and Movement Disorders Clinic (NM PDMDC) to enhance medical care and recruitment of underrepresented groups in the PD GENEration study and the Parkinson's Progression Markers Initiative from the Michael J. Fox Foundation.

Design/Methods:

We established a Spanish-speaking clinic at NM PDMDC, staffed with Spanish-speaking physicians, who served as sub-investigators in the study, appointed a dedicated Spanish-speaking research coordinator, and created a new community engagement coordinator role focused on outreach through health fairs, educational workshops, and research presentations. Key study materials, including the consent form, were translated into Spanish.

 

Results:
From July 2024-July 2025, we participated in 17 health fairs, organized 2 workshops (185 attendees), and held 2 research presentations (35 attendees). Recruitment of patients who identified as Hispanic/Latino from July 2024-July 2025 was 49 out of 387 participants (12.7%), compared to 7 out of 98 (7.1%) from July 2023-July 2024. Recruitment of patients who identified as Black/African American between July 2024-July 2025 was 19 out of 387 (5%), compared to 3 out of 98 (3.1%) in the prior year.
Conclusions:

The establishment of a Spanish-speaking clinic, dedicated engagement staff, and translated materials addressed key barriers, including language accessibility, limited outreach, and lack of representation among clinical staff, which led to increased recruitment and thus demonstrating the effectiveness of combining community engagement with specialized clinical resources.

10.1212/WNL.0000000000217372
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