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本文引用的文献

1
Establishment of a predominantly African-American cohort for the study of Alzheimer's disease: the South Carolina Alzheimer's disease clinical core.建立一个主要由非裔美国人组成的队列用于阿尔茨海默病研究:南卡罗来纳州阿尔茨海默病临床核心。
Dement Geriatr Cogn Disord. 2009;27(4):329-36. doi: 10.1159/000207446. Epub 2009 Mar 10.
2
Potential ethnic modifiers in the assessment and treatment of Alzheimer's disease: challenges for the future.阿尔茨海默病评估与治疗中的潜在种族修饰因素:未来的挑战
Int Psychogeriatr. 2007 Jun;19(3):539-58. doi: 10.1017/S104161020700511X. Epub 2007 Apr 23.
3
African Americans' participation in clinical research: importance, barriers, and solutions.非裔美国人参与临床研究:重要性、障碍与解决方案。
Am J Surg. 2007 Jan;193(1):32-9; discussion 40. doi: 10.1016/j.amjsurg.2005.11.007.
4
Use of live theater to increase minority participation in Alzheimer disease research.利用现场戏剧来提高少数群体对阿尔茨海默病研究的参与度。
Alzheimer Dis Assoc Disord. 2006 Apr-Jun;20(2):105-11. doi: 10.1097/01.wad.0000213806.66811.ea.
5
Offering African Americans opportunities to participate in clinical trials research: how social workers can help.为非裔美国人提供参与临床试验研究的机会:社会工作者如何提供帮助。
Health Soc Work. 2005 Nov;30(4):296-304. doi: 10.1093/hsw/30.4.296.
6
Current research findings on end-of-life decision making among racially or ethnically diverse groups.关于不同种族或族裔群体临终决策的当前研究发现。
Gerontologist. 2005 Oct;45(5):634-41. doi: 10.1093/geront/45.5.634.
7
Community-based research: barriers to recruitment of African Americans.基于社区的研究:非裔美国人招募的障碍
Nurs Outlook. 2004 Sep-Oct;52(5):234-40. doi: 10.1016/j.outlook.2004.04.012.
8
Ethnic minority older adults participating in clinical research: developing trust.参与临床研究的少数族裔老年人:建立信任。
J Aging Health. 2004 Nov;16(5 Suppl):93S-123S. doi: 10.1177/0898264304268151.
9
Approaches to improving recruitment and retention of minority elders participating in research: examples from selected research groups including the National Institute on Aging's Resource Centers for Minority Aging Research.提高参与研究的少数族裔老年人招募率和留存率的方法:来自包括美国国立衰老研究所少数族裔衰老研究资源中心在内的选定研究小组的实例。
J Aging Health. 2004 Nov;16(5 Suppl):9S-17S. doi: 10.1177/0898264304268146.
10
Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers.临终之际:非裔美国人和白人患者及其家庭护理人员的态度、偏好与行为
J Clin Oncol. 2003 Feb 1;21(3):549-54. doi: 10.1200/JCO.2003.12.080.

非裔美国人参与包含脑捐赠的阿尔茨海默病研究。

African American participation in Alzheimer's disease research that includes brain donation.

机构信息

Sanders-Brown Center on Aging, University of Kentucky, Lexington, USA.

出版信息

Am J Alzheimers Dis Other Demen. 2011 Sep;26(6):469-76. doi: 10.1177/1533317511423020. Epub 2011 Oct 18.

DOI:10.1177/1533317511423020
PMID:22009227
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3329867/
Abstract

Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to a 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 the 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.

摘要

从历史上看,少数群体在研究和临床试验中的代表性不足。少数群体参与度低的原因有很多,包括对以白种人为主的研究机构的不信任,以及对研究目的缺乏了解。本研究旨在确定非裔美国人对阿尔茨海默病(AD)研究的兴趣,并招募非裔美国人作为当前 AD 研究中的正常对照组,最终目标是在死亡后获得大脑捐赠的同意。参与者为 46 名年龄在 65 岁或以上的非裔美国人,他们接受了关于医疗程序知识和研究经验的采访。在最初的招募访谈后,31.7%的参与者同意每年进行测试,最终捐赠大脑。研究结果表明,参与者对用于延长生命的医疗程序的了解程度与捐赠大脑的意愿之间存在中等程度的关系。