Increasing research study engagement in minoritized populations: An example from the Black Women Inflammation and Tau Study.

Autor: Stradford J; SDSU/UCSD Joint Doctoral Program in Clinical Psychology, San Diego, California, USA.; Department of Psychiatry, University of California, San Diego, La Jolla, California, USA., Heyworth NC; Department of Neurosciences, University of California, San Diego, La Jolla, California, USA., Jackson M; Department of Neurosciences, University of California, San Diego, La Jolla, California, USA., Norman M; Department of Psychiatry, University of California, San Diego, La Jolla, California, USA., Banks SJ; Department of Neurosciences, University of California, San Diego, La Jolla, California, USA.; Department of Psychiatry, University of California, San Diego, La Jolla, California, USA., Sundermann EE; Department of Psychiatry, University of California, San Diego, La Jolla, California, USA., Thames AD; Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, Los Angeles, California, USA.
Jazyk: angličtina
Zdroj: Alzheimer's & dementia : the journal of the Alzheimer's Association [Alzheimers Dement] 2024 Oct; Vol. 20 (10), pp. 7403-7410. Date of Electronic Publication: 2024 Aug 14.
DOI: 10.1002/alz.14177
Abstrakt: Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non-Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community-engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community-Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient-Centered Outcomes Research Institute (PCORI). HIGHLIGHTS: Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community-engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community-Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient-Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.
(© 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)
Databáze: MEDLINE
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