In an effort to close the gap in neurological outcomes for underserved populations, a UTHealth Houston project funded with $2.9 million from the National Institutes of Health (NIH) will engage community partners to improve the design of clinical trials.
Neurologic conditions including stroke, Parkinson’s disease, and vascular cognitive impairment and dementia contribute to the leading causes of death and disability in the U.S. The goal of the project is to build an infrastructure for community-engaged research interventions for those three neurologic conditions affecting brain health.
“Historically, clinical trials for neurological conditions haven’t consistently or holistically included the voice of underserved communities that shoulder the largest burden of disease,” said Anjail Z. Sharrief, MD, MPH, principal investigator for the trial and professor with the Department of Neurology in McGovern Medical School at UTHealth Houston. “If community input is part of the research plan from the beginning, the clinical trial will more likely include a broader patient population, and research findings and outcomes will be more applicable to the wider range of patients affected by the conditions.”
For example, Sharrief said, designing clinical trials that require patients to come into the clinic during the work week instead of Saturdays limits the ability of lower-wage earners who would lose income by participating. Follow-up televisits instead of in-person visits also make a clinical trial easier for people to join. Including funding for transportation and bilingual research staff would also make it more possible for people from underserved communities to participate.
“We often develop trials for what we, the researchers, are able to do, not what the community is able to do,” Sharrief said.
The project will establish a Brain Health Equity Collaborative to facilitate the academic and community partnerships for clinical trial development. The collaborative will include a community advisory board to review consent forms, assessment questions, and other components of a research trial to ensure they are relatable to a wide range of patients. A community oversight committee will ensure that patient and caregiver voices are being heard and that trials are adhering to protocols for community engagement.
“When you cannot recruit patients from certain communities to participate in a clinical trial, it’s not merely an issue of trust or interest — you’ve made it too hard for them to participate,” Sharrief said. “This is super exciting because it marries our passion for research with our commitment to community engagement and empowerment.”
