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To boost Latino participation in Alzheimer's studies, don't skimp on 'personalismo,' researcher says

To boost Latino participation in Alzheimer's studies, don't skimp on 'personalismo,' researcher says
The micro-meso-macro framework for diversifying AD/ADRD trial recruitment. Abbreviation: PI, principal investigator. Credit: Alzheimer's & Dementia: Translational Research & Clinical Interventions (2023). DOI: 10.1002/trc2.12389

Latinos make up 19% of the U.S. population, yet they represent only a small fraction of people enrolled in clinical trials for Alzheimer's treatment. USC researcher María Aranda has recommendations for fixing that.

"There has been too much onus, even blame, put on Latino individuals and families. But when researchers ignore micro-level details, it results in macro-level exclusion of Latinos from ," said Aranda, who is the director of the outreach, recruitment and engagement core of the Alzheimer's Disease Research Center at USC. "For example, Latinos' expectation of 'personalismo'—the quality and trustworthiness of interpersonal interactions—can be thwarted when providers' (and by extension researchers') time with them in the care visit or encounter is brief or hurried."

Latinos and Alzheimer's research: Addressing underrepresentation

To address the issue of underrepresentation of U.S. Latinos in Alzheimer's research, Aranda and her co-authors have issued an urgent call to the to address this problem. Their study, just published in Alzheimer's & Dementia: Translational Research & Clinical Interventions, outlines key steps:

  • Embed recruitment and research operations within Latino communities and settings.
  • Creatively address limited literacy in English and Spanish.
  • Make binding all diversity plans at the Food and Drug Administration for AD/ADRD (Alzheimer's disease and Alzheimer's disease related dementias) clinical trials.
  • Support national legislation promoting trial participation of underrepresented groups.

"Closing the racial and ethnic disparity gap in Alzheimer's and Alzheimer's-related dementia trials," Aranda said, "is clearly good science."

More information: María P. Aranda et al, A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro‐meso‐macro perspective, Alzheimer's & Dementia: Translational Research & Clinical Interventions (2023). DOI: 10.1002/trc2.12389

Citation: To boost Latino participation in Alzheimer's studies, don't skimp on 'personalismo,' researcher says (2023, June 19) retrieved 21 May 2024 from https://medicalxpress.com/news/2023-06-boost-latino-alzheimer-dont-skimp.html
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