Location
Philadelphia, PA
Start Date
30-4-2025 1:00 PM
End Date
30-4-2025 4:00 PM
Description
Introduction: Clinical trials form the basis for advancing medical best practices, yet lack of diverse representation perpetuates healthcare disparities. We aimed to characterize trends in reporting and representation of race and ethnicity in neurology clinical trials.
Methods: In a cross-sectional study of United States (US) based trials (2007-2018) with results reported to the ClinicalTrials.gov registry, we assessed whether race/ethnicity data were reported and evaluated trial diversity by comparing race and ethnicity representation (proportion of enrolled participants reported as White, Black, Hispanic, Asian, or Native American) to 2010 US Census data. We studied the role of trial funding sponsor (Industry, US Government, Academic) and 19 neurologic disease foci: Malignancy, Neurovascular, Peripheral Nervous System/Spine, Movement, Trauma, Neurodegenerative, Pain, Headache, Malformation, Inflammation, Seizure, Sleep, Systemic Disorders, Muscle and Neuromuscular Junction, Infection, Cutaneous, Autonomic, Otology, Other. Results: Of 16,953 neurologic trials, 37.5% (6,361) were US-based of which 2,514 (39.5%) reported results to the registry. 1,444 (57.4%) reported any race/ethnicity data involving 151,263 participants. Reporting was significantly associated with sponsor (p< 0.001) and disease category (p< 0.001). Racial and ethnic minorities (17.6%) were underrepresented relative to US Census data (27.6%) most notably with Hispanic (6.2% vs 15.4%) and Asian (0.8% vs 5.0%) patients. Trials regarding Autonomic, Otology, Systemic, and Movement Disorders were least diverse (all < 10%) while Infection (56.1%), Neurovascular (33.4%), and Trauma (32.4%) were most diverse.
Conclusions: We found that clinical trials in neurology inadequately report race/ethnicity data and when doing so are not representative of the US population, which perpetuates systemic healthcare inequalities. This presents an opportunity for the field to further investigate the barriers to trial enrollment and improve access in future efforts to reduce existing disparities.
Embargo Period
6-2-2025
Included in
Clinical trials in neurology registered 2007-2018 demonstrate room for improvement in reporting and representation of race and ethnicity.
Philadelphia, PA
Introduction: Clinical trials form the basis for advancing medical best practices, yet lack of diverse representation perpetuates healthcare disparities. We aimed to characterize trends in reporting and representation of race and ethnicity in neurology clinical trials.
Methods: In a cross-sectional study of United States (US) based trials (2007-2018) with results reported to the ClinicalTrials.gov registry, we assessed whether race/ethnicity data were reported and evaluated trial diversity by comparing race and ethnicity representation (proportion of enrolled participants reported as White, Black, Hispanic, Asian, or Native American) to 2010 US Census data. We studied the role of trial funding sponsor (Industry, US Government, Academic) and 19 neurologic disease foci: Malignancy, Neurovascular, Peripheral Nervous System/Spine, Movement, Trauma, Neurodegenerative, Pain, Headache, Malformation, Inflammation, Seizure, Sleep, Systemic Disorders, Muscle and Neuromuscular Junction, Infection, Cutaneous, Autonomic, Otology, Other. Results: Of 16,953 neurologic trials, 37.5% (6,361) were US-based of which 2,514 (39.5%) reported results to the registry. 1,444 (57.4%) reported any race/ethnicity data involving 151,263 participants. Reporting was significantly associated with sponsor (p< 0.001) and disease category (p< 0.001). Racial and ethnic minorities (17.6%) were underrepresented relative to US Census data (27.6%) most notably with Hispanic (6.2% vs 15.4%) and Asian (0.8% vs 5.0%) patients. Trials regarding Autonomic, Otology, Systemic, and Movement Disorders were least diverse (all < 10%) while Infection (56.1%), Neurovascular (33.4%), and Trauma (32.4%) were most diverse.
Conclusions: We found that clinical trials in neurology inadequately report race/ethnicity data and when doing so are not representative of the US population, which perpetuates systemic healthcare inequalities. This presents an opportunity for the field to further investigate the barriers to trial enrollment and improve access in future efforts to reduce existing disparities.