Recruitment of Black Elderly for Clinical Research Studies of Dementia: The CERAD Experience

Abstract

Nine Consortium to Establish a Registry for Alzheimer's Disease (CERAD) sites were surveyed to identify barriers to recruiting black subjects. Major cited obstacles were expenses, transportation difficulties, and especially lack of rapport with clinic staff. Major factors in overcoming these barriers are a good referral network involving the black community, community education about Alzheimer's disease (AD), and professional staff who are particularly sensitive to the needs of the black population. CERAD efforts to increase community awareness of Alzheimer's disease and staff sensitivity to minority needs have nearly doubled the proportion of black subjects enrolled.

The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits

“…Kressin et al [65] found a positive association between educational level and participation in VA-sponsored biomedical research. Other investigators have found similar results in civilian populations [3,21,[66][67][68].…”

“…For example, minority distrust of the medical system was shown by Ballard and colleagues [21] to be a significant deterrent to research participation, and these researchers attributed some of this distrust to minority individuals' perceptions of institutional racism.…”

“…Rural and elderly minority populations have least often been included in clinical trials, possibly for the reasons stated above [39,49]. Conversely, individuals who usually receive health care at tertiary health care facilities are more likely to participate in research [21], because many clinical trials are conducted in these types of facilities. Notably, few trials are conducted at institutions where poor minority patients usually receive health care [50,51].…”

“…Further, the extent to which individuals believe that services from tertiary care facilities are accessible (eg, financially, racially/culturally, and in terms of transportation) may determine the use of these facilities [21]. Ballard et al [21] suggested that minority individuals' decreased likelihood of research participation is a function first of racially conscribed socioeconomic factors, which in turn decrease the likelihood of health care utilization, which in turn decreases the likelihood of being offered participation in a clinical study.…”

Barriers to the participation of African‐American patients with cancer in clinical trials

“…It has been shown that both education and socioeconomic status are significant to clinical participation in other studies, such as Clinical Research Studies of Dementia, the Alzheimer group registry. 22 In addition, a recent retrospective study of 2099 patients from Cancer and Leukemia Group B (CALGB) protocols suggested that it is educational level, and not race, that correlates with the poorer outcome of the treatment of patients with cancer. 1 However, from this study, it is difficult to know for certain whether education and income on their own actually influence decisions regarding clinical trial participation or whether these variables may be confounders, masking the effects of other variables that may not have been measured in our study.…”