Literature DB >> 22009227

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

Kathryn R Darnell1, Caitlin McGuire, Deborah D Danner.   

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.

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Year:  2011        PMID: 22009227      PMCID: PMC3329867          DOI: 10.1177/1533317511423020

Source DB:  PubMed          Journal:  Am J Alzheimers Dis Other Demen        ISSN: 1533-3175            Impact factor:   2.035


  13 in total

1.  Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making.

Authors:  C M Waters
Journal:  Qual Health Res       Date:  2001-05

2.  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.

Authors:  Sidney M Stahl; Lisa Vasquez
Journal:  J Aging Health       Date:  2004-11

3.  Ethnic minority older adults participating in clinical research: developing trust.

Authors:  Gina Moreno-John; Anthony Gachie; Candace M Fleming; Anna Nápoles-Springer; Elizabeth Mutran; Spero M Manson; Eliseo J Pérez-Stable
Journal:  J Aging Health       Date:  2004-11

Review 4.  Community-based research: barriers to recruitment of African Americans.

Authors:  Barbara L Dancy; Joellen Wilbur; Marie Talashek; Gloria Bonner; Cynthia Barnes-Boyd
Journal:  Nurs Outlook       Date:  2004 Sep-Oct       Impact factor: 3.250

Review 5.  Current research findings on end-of-life decision making among racially or ethnically diverse groups.

Authors:  Jung Kwak; William E Haley
Journal:  Gerontologist       Date:  2005-10

6.  Offering African Americans opportunities to participate in clinical trials research: how social workers can help.

Authors:  Susan E Mason
Journal:  Health Soc Work       Date:  2005-11

7.  Attitudes and beliefs of African Americans toward participation in medical research.

Authors:  G Corbie-Smith; S B Thomas; M V Williams; S Moody-Ayers
Journal:  J Gen Intern Med       Date:  1999-09       Impact factor: 5.128

8.  Autopsy recruitment program for African Americans.

Authors:  G J Bonner; O K Darkwa; P B Gorelick
Journal:  Alzheimer Dis Assoc Disord       Date:  2000 Oct-Dec       Impact factor: 2.703

9.  Establishment of a predominantly African-American cohort for the study of Alzheimer's disease: the South Carolina Alzheimer's disease clinical core.

Authors:  David L Bachman; Marilyn Stuckey; Myla Ebeling; Mark T Wagner; W James Evans; Victor Hirth; Aljoeson Walker; Mohammed Memon; Rajiv Joglekar; Warachal Faison; Jacobo E Mintzer
Journal:  Dement Geriatr Cogn Disord       Date:  2009-03-10       Impact factor: 2.959

10.  Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers.

Authors:  Etienne Phipps; Gala True; Diana Harris; Umi Chong; William Tester; Stephen I Chavin; Leonard E Braitman
Journal:  J Clin Oncol       Date:  2003-02-01       Impact factor: 44.544

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  20 in total

1.  African Americans and Clinical Research: Evidence Concerning Barriers and Facilitators to Participation and Recruitment Recommendations.

Authors:  Travonia B Hughes; Vijay R Varma; Corinne Pettigrew; Marilyn S Albert
Journal:  Gerontologist       Date:  2017-04-01

Review 2.  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

Authors:  Sheba George; Nelida Duran; Keith Norris
Journal:  Am J Public Health       Date:  2013-12-12       Impact factor: 9.308

3.  Challenges and Considerations Related to Studying Dementia in Blacks/African Americans.

Authors:  Eseosa T Ighodaro; Peter T Nelson; Walter A Kukull; Frederick A Schmitt; Erin L Abner; Allison Caban-Holt; Shoshana H Bardach; Derrick C Hord; Crystal M Glover; Gregory A Jicha; Linda J Van Eldik; Alexander X Byrd; Anita Fernander
Journal:  J Alzheimers Dis       Date:  2017       Impact factor: 4.472

4.  The Impact of Latino Values and Cultural Beliefs on Brain Donation: Results of a Pilot Study to Develop Culturally Appropriate Materials and Methods to Increase Rates of Brain Donation in this Under-Studied Patient Group.

Authors:  Ann Choryan Bilbrey; Marika B Humber; Edward D Plowey; Iliana Garcia; Lakshmi Chennapragada; Kanchi Desai; Allyson Rosen; Nusha Askari; Dolores Gallagher-Thompson
Journal:  Clin Gerontol       Date:  2017-12-11       Impact factor: 2.619

5.  Will My Soul Go to Heaven If They Take My Brain? Beliefs and Worries About Brain Donation Among Four Ethnic Groups.

Authors:  Linda Boise; Ladson Hinton; Howard J Rosen; Mary Ruhl
Journal:  Gerontologist       Date:  2017-08-01

6.  The Health Equity Through Aging Research And Discussion (HEARD) Study: A Proposed Two-Phase Sequential Mixed-Methods Research Design To Understand Barriers And Facilitators Of Brain Donation Among Diverse Older Adults.

Authors:  Crystal M Glover; Raj C Shah; David A Bennett; Robert S Wilson; Lisa L Barnes
Journal:  Exp Aging Res       Date:  2020-04-08       Impact factor: 1.645

7.  Knowledge and Attitudes in Alzheimer's Disease in a Cohort of Older African Americans and Caucasians.

Authors:  J Christina Howell; Oretunlewa Soyinka; Monica Parker; Thomas L Jarrett; David L Roberts; Cornelya D Dorbin; William T Hu
Journal:  Am J Alzheimers Dis Other Demen       Date:  2015-12-08       Impact factor: 2.035

8.  Cerebral Amyloid Angiopathy: Similarity in African-Americans and Caucasians with Alzheimer's Disease.

Authors:  Dennis M Kamara; Umesh Gangishetti; Marla Gearing; Monica Willis-Parker; Liping Zhao; William T Hu; Lary C Walker
Journal:  J Alzheimers Dis       Date:  2018       Impact factor: 4.472

9.  Incentives and barriers to research participation and brain donation among African Americans.

Authors:  Tyler Schnieders; Deborah D Danner; Caitlin McGuire; Flores Reynolds; Erin Abner
Journal:  Am J Alzheimers Dis Other Demen       Date:  2013-05-31       Impact factor: 2.035

10.  An intervention to enhance Alzheimer's disease clinical research participation among older African Americans.

Authors:  Angela L Jefferson; Susan Lambe; Raymond R Romano; Dandan Liu; Fareesa Islam; Neil Kowall
Journal:  J Alzheimers Dis       Date:  2013       Impact factor: 4.472

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