2016
DOI: 10.1016/j.trci.2016.09.004
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African Americans are less likely to enroll in preclinical Alzheimer's disease clinical trials

Abstract: IntroductionAlzheimer's disease (AD) incidence is disproportionately high in African Americans, yet, recruitment of this community to AD clinical trials is challenging.MethodsWe compared 47 African Americans and 78 whites in their willingness to enroll in a hypothetical preclinical AD trial and examined barriers and facilitators in their decision making.ResultsAfrican American race (OR = 0.45; 95% CI, 0.22–0.93) and score on the research attitude questionnaire (OR = 1.12; 95% CI, 1.04–1.22) were independently … Show more

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Cited by 79 publications
(84 citation statements)
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“…We found that the representation of blacks among RCT participants has decreased since 2006-2011 in the USA, which is consistent with reviews of race/ethnic representation in other disease states [16]. Reasons for minority under-representation in RCTs are multifactorial and often involve system-level actors-e.g, clinicians, hospitals, and the community [21][22][23][24]. Historical acts of discrimination and marginalization in healthcare settings (e.g., the Tuskegee Syphilis Study) have been hypothesized as reasons why racial minorities are more distrustful of health systems and may also contribute to the under-representation of these groups in RCTs.…”
Section: Discussionsupporting
confidence: 83%
“…We found that the representation of blacks among RCT participants has decreased since 2006-2011 in the USA, which is consistent with reviews of race/ethnic representation in other disease states [16]. Reasons for minority under-representation in RCTs are multifactorial and often involve system-level actors-e.g, clinicians, hospitals, and the community [21][22][23][24]. Historical acts of discrimination and marginalization in healthcare settings (e.g., the Tuskegee Syphilis Study) have been hypothesized as reasons why racial minorities are more distrustful of health systems and may also contribute to the under-representation of these groups in RCTs.…”
Section: Discussionsupporting
confidence: 83%
“…Many articles have published goals and strategies for recruiting Blacks/African Americans and other marginalized groups into clinical studies—one major goal discussed in these articles is to build long-term trust within the Black/African American community [35, 40, 84]. Some recommendations for building trust are as follows: 1) publicly acknowledging the historical mistreatment of Blacks/African Americans in biomedical research [24, 36, 8385], 2) adequately explaining the consent process [24, 36, 86], and protections in place to prevent mistreatment, 3) engaging in ongoing Q&A discussions with the community [24, 30, 40, 84, 85, 87, 88], and 4) creating relationships that include patients, caregivers, health-care providers, community leaders, researchers, and study coordinators [89]. Secondly, ADCs should actively enroll Blacks/African Americans, attach specific research questions, and perform power analyses so that it can be ensured that comparisons among individuals from different racial/ethnic groups will be valid.…”
Section: Addressing the Problem: Considerations For The Fieldmentioning
confidence: 99%
“…Among NH Blacks, study participation may have been impaired. There is evidence to suggest that NH Blacks in the United States may be cautious about participating in research studies due to historical abuses by the research community (e.g., Tuskegee Syphilis Study) (Cuerda & López‐Muñoz, ; Harris, Gorelick, Samuels, & Bempong, ; Zhou et al, ). Reasons for under‐participation may include: lack of awareness, economic factors, communication issues, and mistrust (Harris et al, ).…”
Section: Discussionmentioning
confidence: 99%