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Abstract Details

Improving Recruitment of Underrepresented Groups in the PD GENEration Study
Movement Disorders
P9 - Poster Session 9 (5:00 PM-6:00 PM)
16-008
Improving recruitment of underrepresented groups in the PD GENEration study

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.

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.

 

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.

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.

Authors/Disclosures
Rebecca Jules, MD
PRESENTER
Ms. Jules has nothing to disclose.
Monika Szela, MHA Ms. Szela has nothing to disclose.
Karen Williams (Northwestern University) Karen Williams has nothing to disclose.
Rebecca Lopez, MPH Ms. Lopez has nothing to disclose.
Jared Solis, BS Mr. Solis has nothing to disclose.
Carla Aranda (Northwestern University Feinberg School of Medicine) Dr. Aranda has nothing to disclose.
William Morgan Mr. Morgan has nothing to disclose.
Niccolo Mencacci, MD, PhD (Northwestern University) The institution of Dr. Mencacci has received research support from NIH.
Danielle Larson, MD (Northwestern University, Feinberg School of Medicine) Dr. Larson has received personal compensation in the range of $0-$499 for serving as a Consultant for Acadia Pharmaceuticals.
Paulina Gonzalez Latapi, MD (Northwestern University) The institution of Dr. Gonzalez Latapi has received research support from Michael J Fox Foundation. The institution of Dr. Gonzalez Latapi has received research support from Parkinson Foundation.