Improving Black/African American Recruitment in ADRD Observational Studies: Black Women Inflammation and Tau Study

Abstract Background Black/African American women are the most at‐risk demographic group for developing Alzheimer’s disease and related dementias (ADRD). Unfortunately, Black Americans are underrepresented in research, accounting for just 8% of clinical trial participants in the USA. Restrictive study exclusion criteria and medical mistrust are pervasive barriers to research participation in minoritized communities and are often disregarded during the development of a research study. The Black Women Inflammation and Tau Study (BWITS) is an observational study aiming to identify biopsychosocial risk factors for ADRD in Black women to improve health outcomes. Study development was informed by Community‐Based Participatory Research (CBPR) and National Institute on Minority Health and Health Disparities (NIMHD) Research Frameworks to address common participation challenges in minoritized groups. Method BWITS is utilizing the CBPR and NIMHD frameworks to design the study and develop culturally informed and effective recruitment strategies. Recruitment is expected to begin in spring, 2024. Result Multidisciplinary Team . The study has established a diverse multidisciplinary research team including Black neuropsychologists, neuroscientists, nurse practitioners, and scholars working together to address participants needs. Community Reciprocity & Partnerships . BWITS strives to establish community reciprocity by providing education outreach to the community and communicating procedures, results, and providing health data to participants. The study team is actively working to build trust through community partnerships with Black community organizations and through routine consultation with a representative Community Advisory Board. Reducing Barriers . BWITS will use minimally invasive blood draws to study ADRD biomarkers. To minimize time and transportation burden and increase accessibility, BWITS study visits will take place in convenient locations within predominantly Black communities of San Diego and Los Angeles with transportation options offered. Acknowledging Health Determinants in Minoritized Groups . Diabetes affects 12.1% of Black American adults; however, individuals with diabetes are often ineligible from participating in ADRD studies resulting in disproportionate exclusion. BWITS has adopted broader eligibility criteria to combat this systemic problem. Conclusion Understanding and incorporating the lived experiences of special populations should inform the foundation of any research study. The results of study enrollment will illustrate the significance of establishing a thoughtful recruitment plan for Black women research participants.

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Publication Details

Journal
Alzheimer s & Dementia
Published
2024-12-01
DOI
https://doi.org/10.1002/alz.091960
Primary Topic
Diversity and Career in Medicine
Type
article
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article

Improving Black/African American Recruitment in ADRD Observational Studies: Black Women Inflammation and Tau Study

Erin E. Sundermann, Sarah Jane Banks, Joy Stradford, M. D. Norman et al.
Alzheimer s & Dementia
Diversity and Career in Medicine
article

Improving Black/African American Recruitment in ADRD Observational Studies: Black Women Inflammation and Tau Study

Erin E. Sundermann, Sarah Jane Banks, Joy Stradford, M. D. Norman, April Denise Thames, Nadine C. Heyworth, Michelle Jackson
article en

Abstract

Abstract Background Black/African American women are the most at‐risk demographic group for developing Alzheimer’s disease and related dementias (ADRD). Unfortunately, Black Americans are underrepresented in research, accounting for just 8% of clinical trial participants in the USA. Restrictive study exclusion criteria and medical mistrust are pervasive barriers to research participation in minoritized communities and are often disregarded during the development of a research study. The Black Women Inflammation and Tau Study (BWITS) is an observational study aiming to identify biopsychosocial risk factors for ADRD in Black women to improve health outcomes. Study development was informed by Community‐Based Participatory Research (CBPR) and National Institute on Minority Health and Health Disparities (NIMHD) Research Frameworks to address common participation challenges in minoritized groups. Method BWITS is utilizing the CBPR and NIMHD frameworks to design the study and develop culturally informed and effective recruitment strategies. Recruitment is expected to begin in spring, 2024. Result Multidisciplinary Team . The study has established a diverse multidisciplinary research team including Black neuropsychologists, neuroscientists, nurse practitioners, and scholars working together to address participants needs. Community Reciprocity & Partnerships . BWITS strives to establish community reciprocity by providing education outreach to the community and communicating procedures, results, and providing health data to participants. The study team is actively working to build trust through community partnerships with Black community organizations and through routine consultation with a representative Community Advisory Board. Reducing Barriers . BWITS will use minimally invasive blood draws to study ADRD biomarkers. To minimize time and transportation burden and increase accessibility, BWITS study visits will take place in convenient locations within predominantly Black communities of San Diego and Los Angeles with transportation options offered. Acknowledging Health Determinants in Minoritized Groups . Diabetes affects 12.1% of Black American adults; however, individuals with diabetes are often ineligible from participating in ADRD studies resulting in disproportionate exclusion. BWITS has adopted broader eligibility criteria to combat this systemic problem. Conclusion Understanding and incorporating the lived experiences of special populations should inform the foundation of any research study. The results of study enrollment will illustrate the significance of establishing a thoughtful recruitment plan for Black women research participants.

Alzheimer s & DementiaVol. 20(S7)
University of California, Los Angeles (US), San Diego State University (US), University of California San Diego (US)
Openalex Percentile: Top 62%
Diversity and Career in Medicine
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