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.
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.