Potential ethnic modifiers in the assessment and treatment of Alzheimer's disease: challenges for the future

Faison, Warachal; Schultz, Susan K.; Aerssens, Jeroen; Alvidrez, Jennifer; Anand, Ravi; Farrer, Lindsay A.; Jarvik, Lissy F.; Manly, Jennifer J.; McRae, Thomas; Murphy, Greer M.; Olin, Jason T.; Regier, Darrel A.; Sano, Mary; Mintzer, Jacobo

doi:10.1017/s104161020700511x

Cited by 69 publications

(60 citation statements)

References 57 publications

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“…Minority patients are more likely receive care from nonspousal family members [16,17]; have less access to medical care and lower rates of AD medication use [18,19]; and have lower participation rates in AD clinical trials [20]. In NACC, a larger proportion of minority patients exists among the nonspousal caregiver-patient dyads and these patients less commonly took AD medications.…”

Section: Discussionmentioning

confidence: 99%

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Grill

Monsell

Karlawish

2012

Dement Geriatr Cogn Disord

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Background/Aims: Alzheimer’s disease (AD) clinical trials enroll two participants: a patient and a study partner. The primary caregiver most often fills the role of study partner and most trial study partners are spousal caregivers. Methods: AD trial inclusion criteria were applied to baseline data from 5,674 probable AD dementia research participants in the National Alzheimer’s Coordinating Center Uniform Data Set. Eligibility was compared among patients with spousal, adult child, and other types of study partners. Results: Patients with spousal study partners were more frequently eligible than patients with adult child study partners. Compared to patients with spousal study partners, patients with adult child study partners were more frequently ineligible because of age, residence in skilled nursing facility, low scores on the Mini-Mental State Examination, highscores on the Hachinski Ischemia Scale, and failure to fulfill a minimum number of weekly visits with the study partner. Conclusions: In this sample, patients with adult child study partners were less likely to qualify for AD clinical trials than were patients with spousal study partners. This may contribute to the lower representation of patients with adult child caregivers in these studies.

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Section: Discussionmentioning

confidence: 99%

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Grill

Monsell

Karlawish

2012

Dement Geriatr Cogn Disord

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“…In the year 2000, researchers from the National Institute on Aging, the Alzheimer's Disease Cooperative Study and pharmaceutical companies reviewed their clinical trials' data to ascertain the number of non-white subjects in their clinical trials for AD. An analysis of this large comprehensive data set of subjects recruited into clinical research programs indicated that non-whites represented only 3.6% of the total population studied [6] . This analysis demonstrated that the number of non-white subjects was insufficient to investigate possible ethnic differences in treatment response and adverse events.…”

Section: Introductionmentioning

confidence: 99%

Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

Bachman

Stuckey

Ebeling

et al. 2009

Dement Geriatr Cogn Disord

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Background/Aims: The recruitment of culturally diverse subject populations into research studies, particularly African-Americans (AA), has been the focus of intense interest by many groups. Methods: In this paper, we present the methodology utilized to create a predominantly AA cohort for the longitudinal study of risk factors in Alzheimer’s disease (AD). The underlying strategy was that of identifying geographically diverse clinical venues within South Carolina (SC) where large numbers of AA patients already come to seek medical care. Results: This strategy was successful, although recruitment rates for AA subjects (43.4%) still fell below those for white subjects (70.3%; p = 0.0025). Subject characteristics of AA subjects that chose to enroll were not substantially different from those that declined to participate. The demographic characteristics of this cohort were largely similar to those of the SC Alzheimer Disease Registry, a population-based database. The problems of standardization of subject recruitment and assessment across diverse clinical venues are also addressed. Conclusion: The utilization of geographically diverse sites for research recruitment where minorities already receive medical care is one practical solution to the problem of minority participation in research. Multi-site recruitment to improve minority recruitment can be accomplished with acceptable standardization and inter-rater reliability.

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“…1 An analysis of data gathered by researchers for the National Institute on Aging, the Alzheimer Disease Cooperative Study, and pharmaceutical companies revealed that only 3.6% of the sample population represented non-white subjects. 2 This lack of participation has been attributed to a variety of factors that include a mistrust of the predominately white research establishment with its well-documented history of medical abuse, differing cultural attitudes and beliefs towards research and illness, isolation of older individuals, and a lack of education about the purpose of research in general and the informed consent process in particular. 1, 3–5 …”

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confidence: 99%

African American Participation in Alzheimer’s Disease Research That Includes Brain Donation

Darnell

McGuire

Danner

2011

Am J Alzheimers Dis Other Demen

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Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to variety of factors including a mistrust of the predominately white research establishments and a lack of education about the purpose of research. The current study was designed to determine African-American interest in Alzheimer’s disease (AD) research and to recruit African Americans as normal controls in current AD studies with the goal of eventually gaining consent for brain donation upon death. Participants were 46 African Americans aged 65 or older who were interviewed about knowledge of medical procedures and experience with research. After initial recruitment interviews, 31.7% of participants agreed to yearly testing with eventual brain donation. Study findings suggest a moderate relationship between participants’ knowledge of medical procedures used to prolong life and willingness to donate one’s brain.

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Potential ethnic modifiers in the assessment and treatment of Alzheimer's disease: challenges for the future

Cited by 69 publications

References 57 publications

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

African American Participation in Alzheimer’s Disease Research That Includes Brain Donation

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Potential ethnic modifiers in the assessment and treatment of Alzheimer's disease: challenges for the future

Cited by 69 publications

References 57 publications

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

African American Participation in Alzheimer’s Disease Research That Includes Brain Donation

Contact Info

Product

Resources

About

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials

Are Patients Whose Study Partners Are Spouses More Likely to be Eligible for Alzheimers Disease Clinical Trials