Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders

Robinson, Renã A. S.; Williams, Ishan C.; Cameron, Judy L.; Ward, Keisha; Knox, Melissa; Terry, Melita H; Tamres, Lisa K.; Mbawuike, Uchenna; Garrett, Marita; Lingler, Jennifer H.

doi:10.1002/trc2.12076

Cited by 13 publications

(14 citation statements)

References 41 publications

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“…In addition to being knowledgeable about the study and dementia care, being able to communicate the information clearly and without jargon is also important in recruiting participants (Bethell et al, 2018; Burnell et al, 2015; Robinson et al, 2020). The research team was a diverse group and there was often congruence between the team members and participants.…”

Section: Discussionmentioning

confidence: 99%

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions

et al. 2021

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Recruitment for dementia research is challenging and costly. Using Ajzen’s Theory of Planned Behavior we explored attitudes, perceived norms, and perceived behavioral control of persons living with dementia (PLWD) and their caregivers who participated in one clinical trial to better understand factors that influence dyads’ decisions to enroll. We conducted semi-structured telephone interviews with 12 PLWD and 9 caregivers and utilized directed content analysis. Categories connected with positive attitudes about study enrollment were personal desires of wanting to learn and in-person meetings with knowledgeable staff. Additionally, participants said the money always helps in terms of the financial incentive. Participants reported enrolling to support another person (perceived norm). Study requirements were thought to be easy (perceived behavioral control). Participants highlighted the importance of flexible scheduling and study tasks being completed at their home. Findings can inform future recruitment efforts and should be investigated as effective recruitment methods in other clinical trials.

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Section: Discussionmentioning

confidence: 99%

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions

et al. 2021

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“…Importantly, for better diagnosing AD in all communities and for developing effective therapies, better strategies are needed to increase research participation of African American/Black adults into AD and related dementia research [24]. Currently, African American/Black adults participate in clinical trials at a rate of <~5% and in AD research assessments at <~13% [25][26][27].…”

Section: Introductionmentioning

confidence: 99%

Why Inclusion Matters for Alzheimer’s Disease Biomarker Discovery in Plasma

Khan

Desaire

López

et al. 2021

JAD

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Background: African American/Black adults have a disproportionate incidence of Alzheimer’s disease (AD) and are underrepresented in biomarker discovery efforts. Objective: This study aimed to identify potential diagnostic biomarkers for AD using a combination of proteomics and machine learning approaches in a cohort that included African American/Black adults. Methods: We conducted a discovery-based plasma proteomics study on plasma samples (N = 113) obtained from clinically diagnosed AD and cognitively normal adults that were self-reported African American/Black or non-Hispanic White. Sets of differentially-expressed proteins were then classified using a support vector machine (SVM) to identify biomarker candidates. Results: In total, 740 proteins were identified of which, 25 differentially-expressed proteins in AD came from comparisons within a single racial and ethnic background group. Six proteins were differentially-expressed in AD regardless of racial and ethnic background. Supervised classification by SVM yielded an area under the curve (AUC) of 0.91 and accuracy of 86%for differentiating AD in samples from non-Hispanic White adults when trained with differentially-expressed proteins unique to that group. However, the same model yielded an AUC of 0.49 and accuracy of 47%for differentiating AD in samples from African American/Black adults. Other covariates such as age, APOE4 status, sex, and years of education were found to improve the model mostly in the samples from non-Hispanic White adults for classifying AD. Conclusion: These results demonstrate the importance of study designs in AD biomarker discovery, which must include diverse racial and ethnic groups such as African American/Black adults to develop effective biomarkers.

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“…This may be an important consideration when it comes to improving access for underrepresented populations within Black communities, such as Black men 68 . Finally, as educational materials are developed for clinical trial sites, it is important that they are rooted in the specific context of a community and tailored to how and where community members prefer to receive information 38–40,42,49,51,54 …”

Section: Discussionmentioning

confidence: 99%

Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans

Savold

Cole

Thorpe³

2023

A&D Transl Res & Clin Interv

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IntroductionBlack Americans are disproportionately burdened by Alzheimer's disease (AD) relative to other racial groups in the United States and continue to be underrepresented in AD clinical trials. This review explores the primary barriers for participation in clinical trials among Black Americans and provides literature‐based recommendations to improve the inclusion of Black Americans in AD clinical trials.MethodsWe searched electronic databases and gray literature for articles published in the United States through January 1, 2023, ultimately identifying 26 key articles for inclusion.ResultsBarriers to participation in clinical trials for Black Americans are rooted in social determinants of health, including access to quality education and information, access to health care, economic stability, built environment, and community context. Best practices to improve the inclusion of Black Americans in clinical trials require pharmaceutical companies to adopt a multifaceted approach, investing in innovative strategies for site selection, development of local partnerships, outreach, and education.DiscussionWhile multisectoral action must occur to effectively address the disproportionate burden of AD on Black Americans, the pharmaceutical industry has an important part to play in this space due to their central role in product development and clinical trials.

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Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders

Cited by 13 publications

References 41 publications

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions

Why Inclusion Matters for Alzheimer’s Disease Biomarker Discovery in Plasma

Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans

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