TABLE 1.
Author and year | Article title | Type of source | Study design | Findings |
---|---|---|---|---|
Alzheimer's Association, 2002 | African American's and Alzheimer's disease: a silent epidemic | Report | NA | Black Americans are underrepresented in AD clinical trials and community outreach efforts must be redesigned for inclusion. |
Alzheimer's Association, 2008 | Serving African American families: home and community‐based services for people with dementia and their caregivers. | Toolkit | NA | Recommended ways to support Black populations impacted by AD include providing culturally sensitive educational materials on dementia and caregiving, increasing awareness of AD through community outreach, facilitate connections to resources and services, develop dementia‐competent services to provide support to caregivers. |
Alzheimer's Association, 2021 | 2021 Alzheimer's disease facts and figures, special report: race, ethnicity and Alzheimer's in America | Annual report | NA | Differences in lived experience and clinical trial design explain how Black populations are underrepresented in AD clinical trials. |
Babulal et al., 2020 | Perspectives on ethnic and racial disparities in Alzheimer's disease and related dementias: Update and areas of immediate need | Qualitative research | Review | Recommendations to increase inclusion of Black Americans = in AD clinical trials include developing trainings for practitioners and researchers to improve cultural competence, creating educational materials for communities, and incorporating the impact of social determinants of health into AD trial design. |
Ballard et al., 2013 | Challenges and opportunities: recruitment and retention of African Americans for Alzheimer disease research: lessons learned. | Qualitative research | Community research participation model | The transparency, accountability, and behavior of the trial researchers is critical in determining Black American participation in AD clinical trials. |
Baquet et al., 2008 | Clinical trials: the art of enrollment | Qualitative research | Literature review | Key barriers to participation include SES, distance to trial site, awareness, trust, fear, cultural competency, and costs. Strategy to improve diversity in clinical trials must include increasing research on barriers to participation in each community context, developing diverse teams, developing educational materials, creating sustainable trial infrastructure in community settings. |
Clark et al., 2019 | Increasing diversity in clinical trials: overcoming critical barriers | Qualitative research | Literature review | Solutions for increasing diversity in clinical trials include building trust, increasing communication, and developing a common understanding of goals, growing awareness of clinical trials, revisioning the role of the study coordinator, ensuring proper resources. A multi‐stakeholder approach is critical. |
Coakley et al., 2011 | Dialogues on diversifying clinical trials: successful strategies for engaging women and minorities in clinical trials | Report | NA | Increasing diversity in clinical trials requires strategy related to the inclusion of more female and minority physicians, improved transparency, greater cultural sensitivity in outreach, increased education and outreach, intentional community engagement, and an increased use of technology. |
Cocroft et al., 2020 | Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies | Qualitative research | Systematic review | Five key lessons regarding the creation of diverse registries include “(1) cultural sensitivity (2) building trust relationships (3) inclusive access to research (4) ongoing connection with research participants (5) allocating resources to meet the costs.” |
Denny et al., 2018 | Perspective on the “African American participation in Alzheimer disease research: Effective strategies” | Qualitative research | Workshop and systematic review | Key learnings and recommendations to increase Black American participation in AD research include building awareness, increasing evidence‐based recruitment strategies, practicing transparency, building diverse teams, training on cultural competency, developing long‐term community relationships and partnerships, offering incentives. |
Esiaka et al., 2022 | A Mini‐Review of Strategies for Recruiting Older African Americans to Alzheimer's Disease | Qualitative research | Mini‐review | Strategies to advance participation of Black American populations in AD clinical trials include community outreach, education, at home access, and partnership with local organizations. |
Gilmore‐Bykovskyi et al., 2019 | Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review. | Qualitative research | Systematic review | Attitudes, barriers/facilitators, education, trust, and religiosity are key factors influencing Black American participation in AD clinical trials. |
Graham et al., 2018 | Best strategies to recruit and enroll elderly Blacks into clinical and biomedical research | Quantitative and qualitative research | Retrospective study and community outreach | Health fairs, educational materials and advertisements tailored to communities’ unique health interests and needs, and personal referrals were the most successful means of recruiting Black populations to AD clinical trials. |
Hughson et al., 2016 | A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials | Qualitative research | Systematic review | Significant barriers to participation in clinical trials for diverse populations include mistrust, communication and language, culture, SES, time, and transportation. Suggested strategies to address these barriers include community outreach and relationship building, improved communication tactics, greater cultural sensitivity, improving physical access to trials, and educating companies on common barriers and pitfalls to inclusion. |
Indorewalla et al., 2021 | Modifiable barriers for recruitment and retention of older adults participants from underrepresented minorities in Alzheimer's disease research | Qualitative research | Narrative review | Barriers to participation in AD clinical trials for Black populations include mistrust, lack of awareness, the need for a study partner, and participant burden. |
Langbaum et al., 2022 | Recommendations to address key recruitment challenges of Alzheimer's disease clinical trials | Qualitative research | Advisory panel | The panel identified 27 solutions to improve current AD clinical trial processes, including community outreach, virtual clinical trials, and educational campaigns. |
Lincoln et al., 2018 | Fundamental causes of barriers to participation in Alzheimer's clinical research among African Americans | Qualitative research | Focus group analysis | Factors that influence beliefs and participation in clinical trials among Black American populations include (1) lived experience and discrimination, (2) cultural trauma, (3) cultural norms, (4) a lack of cultural competency in recruitment methods. Recommended ways to increase diversity in clinical trials include transparency, culturally appropriate community outreach and education, and addressing mistrust of research processes. |
Lines et al., 2014 | Racial and ethnic disparities among individuals with Alzheimer's disease in the United States: a literature review | Qualitative research | Literature review | Potential contributors to racial disparities in AD include genetics, comorbidities, poverty, education level, culture, discrimination. Highlight importance of equal provision of health services to advance equity. |
National Institute for Aging, 2020 |
NIA: strategic directions for research 2020‐2025 | Report | NA | Causes of health disparities are multidimensional, and therefore require multifaceted solutions to effectively address them. Including diverse populations in research will require new strategy such as the implementation of community based participatory research methods. |
Robinson et al., 2020 | Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders | Quantitative and qualitative research | Semi‐structured interviews | Culturally relevant communication and educational materials are critical in the recruitment of Black populations to AD clinical trials. |
Shaw et al., 2020 | Recruitment of older African Americans in Alzheimer's disease clinical trials using a community education approach | Qualitative research | Community engaged research approach | Community based recruitment methods increase AD knowledge, clinical trial interest, as well as recruitment into “observational and lifestyle” AD clinical trials. |
Shin et al., 2016 | Underrepresentation of African Americans in Alzheimer's Trials: A Call for Affirmative Action | Article | NA | Recommendations for increasing inclusion of African American populations in AD clinical trials include developing relationships with community‐based organizations and dedicating budget specifically to the recruitment of minority populations. |
U.S. Food and Drug Administration, 2022 | Diversity plans to improve enrollment of participants from underrepresented racial and ethnic populations in clinical trials: draft guidance for industry | Guidance document | NA | To increase diversity in clinical trials companies must design strategy in a way that accounts for factors such as site location and access, community engagement, and ways to streamline processes to ease the burden of participation for patients. |
Weiner et al., 2007 | Alzheimer's disease demonstration grants to states program: cross‐state report on initiatives targeting limited English‐speaking populations and African American communities | Report | NA | There are several areas critical to better engaging diverse populations in AD research: (1) Building trust in communities by investing in relationships and partnering with community organizations, (2) building greater awareness and understanding of AD, (3) using culturally appropriate language and strategies, and (4) understanding the role of family in different contexts. |
Woods‐Burnham et al., 2021 | The role of diverse populations in us clinical trials | Commentary | NA | Increasing diversity in clinical trials requires more diversity among physician teams, community partnerships, greater education and awareness, cultural competency and diversity trainings for clinical trial staff, and greater consideration around cost and transportation. |
Zhou et al., 2017 | African Americans are less likely to enroll in preclinical Alzheimer's disease clinical trials. | Quantitative and qualitative research | Secondary analysis of interviews (a mixed‐methods experimental design) | Black American populations called attention to the importance of factors such as study risks, the requirement of a study partner, study procedures, and study location as strong influences on participation. |
Abbreviations: AD, Alzheimer's disease; NA, not applicable; SES, socioeconomic status.