title: An intervention to enhance Alzheimer's disease clinical research participation among older African Americans.
abstract: BACKGROUND
  Alzheimer's disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites.
  
  
  OBJECTIVE
  The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust.
  
  
  METHODS
  Participants included 52 African American participants from the Boston University Alzheimer's Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers.
  
  
  RESULTS
  There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status.
  
  
  CONCLUSIONS
  The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.
authors: Vanderbilt Memory & Alzheimer's Center, Department of Neurology, Vanderbilt University Medical Center, Nashville, TN 37203, USA. angela.jefferson@vanderbilt.edu
authors: Angela L
authors: AL
authors: Jefferson
authors: Susan
authors: S
authors: Lambe
authors: Raymond R
authors: RR
authors: Romano
authors: Dandan
authors: D
authors: Liu
authors: Fareesa
authors: F
authors: Islam
authors: Neil
authors: N
authors: Kowall
mesh_terms: D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000208:ethnology*; D035843:Biomedical Research; D006801:Humans; D035842:Research Subjects
references: J Gen Intern Med. 2003 Dec;18(12):1036-8
references: 14687263
references: Am J Geriatr Psychiatry. 2008 May;16(5):375-83
references: 18332397
references: J Gen Intern Med. 2006 Sep;21(9):995-1000
references: 16918748
references: Annu Rev Public Health. 2006;27:1-28
references: 16533107
references: Pediatr Transplant. 2001 Dec;5(6):383-5
references: 11737760
references: Clin Transplant. 2010 Nov-Dec;24(6):784-93
references: 20088915
references: Alzheimer Dis Assoc Disord. 2007 Jul-Sep;21(3):232-40
references: 17804956
references: Alzheimer Dis Assoc Disord. 2011 Jan-Mar;25(1):11-6
references: 20856099
references: Alzheimer Dis Assoc Disord. 2000 Oct-Dec;14(4):202-8
references: 11186597
references: J Aging Health. 2004 Nov;16(5 Suppl):93S-123S
references: 15448289
references: J Am Geriatr Soc. 2001 Apr;49(4):477-84
references: 11347796
references: Cancer. 2004 Aug 1;101(3):450-65
references: 15274058
references: Semin Nephrol. 2001 Jul;21(4):419-28
references: 11455531
references: Arch Intern Med. 2002 Nov 25;162(21):2458-63
references: 12437405
references: J Am Geriatr Soc. 2008 Jul;56(7):1236-43
references: 18482298
references: Clin Transplant. 1999 Aug;13(4):342-8
references: 10485377
references: Neurology. 2005 Nov 8;65(9):1395-401
references: 16275826
references: Gerontologist. 1994 Oct;34(5):665-73
references: 7959135
references: Health Psychol. 1997 Mar;16(2):183-95
references: 9269891
references: Am J Alzheimers Dis Other Demen. 2011 Sep;26(6):469-76
references: 22009227
references: Health Educ Behav. 2010 Apr;37(2):264-74
references: 19858313
references: J Consult Clin Psychol. 1983 Jun;51(3):390-5
references: 6863699
references: Alzheimer Dis Assoc Disord. 2003 Jan-Mar;17(1):19-26
references: 12621316
references: Neuroepidemiology. 2007;29(1-2):125-32
references: 17975326
references: Am J Epidemiol. 2001 Oct 1;154(7):635-41
references: 11581097
references: Neurology. 2003 Jun 10;60(11):1777-81
references: 12796530
references: J Am Geriatr Soc. 1996 Aug;44(8):1003-9
references: 8708288
references: Med Clin North Am. 2005 Sep;89(5):921-33, 930
references: 16129104
references: Alzheimer Dis Assoc Disord. 2009 Apr-Jun;23(2):110-6
references: 19474569
references: Health Commun. 2004;16(3):333-46
references: 15265754
references: J Am Geriatr Soc. 2005 Nov;53(11):2012-7
references: 16274388
references: Gerontologist. 2011 Feb;51(1):28-38
references: 20679141
references: J Health Commun. 2010 Jun;15(4):374-87
references: 20574876
references: Ann Fam Med. 2006 May-Jun;4(3):247-52
references: 16735527