Leveraging African American family connectors for Alzheimer's disease genomic studies

被引:1
作者
Byfield, Grace [1 ]
Starks, Takiyah D. [2 ]
Luther, Ronqeiya [3 ]
Edwards, Christopher L. [4 ]
Lloyd, Shawnta L. [2 ,12 ]
Caban-Holt, Allison [2 ]
Adams, Larry Deon [5 ]
Vance, Jeffery M. [5 ,6 ]
Cuccaro, Michael [5 ,6 ,7 ]
Haines, Jonathan L. [8 ,9 ]
Reitz, Christiane [10 ,11 ]
Pericak-Vance, Margaret A. [5 ,6 ]
Byrd, Goldie S. [2 ]
机构
[1] Univ North Carolina Chapel Hill, Sch Med, Dept Genet, Chapel Hill, NC USA
[2] Wake Forest Univ, Bowman Gray Sch Med, Maya Angelou Ctr Hlth Equ, Winston Salem, NC USA
[3] Duke Hlth, DukeWELL, Durham, NC USA
[4] North Carolina Cent Univ, Durham, NC USA
[5] Univ Miami, John P Hussman Inst Human Genom, Miller Sch Med, Miami, FL USA
[6] Univ Miami, Dr John T Macdonald Fdn Dept Human Genet, Miller Sch Med, Miami, FL USA
[7] Univ Miami, Dept Psychol & Behav Sci, Miller Sch Med, Miami, FL USA
[8] Case Western Reserve Univ, Cleveland Inst Computat Biol, Cleveland, OH USA
[9] Case Western Reserve Univ, Dept Populat & Quantitat Hlth Sci, Cleveland, OH USA
[10] Columbia Univ, Gertrude H Sergievsky Ctr, New York, NY USA
[11] Columbia Univ, Taub Inst Res Alzheimers Dis & Aging Brain, New York, NY USA
[12] Wake Forest Univ, Maya Angelou Ctr Hlth Equ, Bowman Gray Sch Med, 525 Vine St,Suite 150, Winston Salem, NC 27101 USA
基金
美国国家卫生研究院;
关键词
African Americans; Alzheimer's disease; family connectors; genomic studies; recruitment; snowball sampling; RISK; PARTICIPATION; RECRUITMENT; ASSOCIATION; DEMENTIA; ALLELE;
D O I
10.1002/alz.13106
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
IntroductionThe underrepresentation of African Americans (AAs) in Alzheimer's disease (AD) research may limit potential benefits from translational applications. This article describes an approach to recruit AA families into an AD genomic study and characteristics of seeds (family connectors) used to overcome recruitment barriers of AA families into AD research. MethodsA four-step outreach and snowball sampling approach relying on family connectors was used to recruit AA families. Descriptive statistics of a profile survey were gathered to understand the demographic and health characteristics of family connectors. ResultsTwenty-five AA families (117 participants) were enrolled in the study via family connectors. Most family connectors self-identified as female (88%), were 60 years of age or older (76%), and attained post-secondary education (77%). DiscussionCommunity-engaged strategies were essential to recruit AA families. Relationships between study coordinators and family connectors build trust early in the research process among AA families. HIGHLIGHTSCommunity events were most effective for recruiting African American families.Family connectors were primarily female, in good health, and highly educated.Systematic efforts by researchers are necessary to "sell" a study to participants.
引用
收藏
页码:5437 / 5446
页数:10
相关论文
共 49 条
[21]   APOE ε4 and the risk for Alzheimer disease and cognitive decline in African Americans and Yoruba [J].
Hendrie, Hugh C. ;
Murrell, Jill ;
Baiyewu, Olusegun ;
Lane, Kathleen A. ;
Purnell, Christianna ;
Ogunniyi, Adesola ;
Unverzagt, Frederick W. ;
Hall, Kathleen ;
Callahan, Christopher M. ;
Saykin, Andrew J. ;
Gureje, Oye ;
Hake, Ann ;
Foroud, Tatiana ;
Gao, Sujuan .
INTERNATIONAL PSYCHOGERIATRICS, 2014, 26 (06) :977-985
[22]   At the Intersection of Rigor and Equity: Health Disparities Research Related to Aging [J].
Hill, Carl V. .
GERONTOLOGY AND GERIATRIC MEDICINE, 2019, 5 :1-3
[23]   Race modifies the relationship between cognition and Alzheimer's disease cerebrospinal fluid biomarkers [J].
Howell, Jennifer C. ;
Watts, Kelly D. ;
Parker, Monica W. ;
Wu, Junjie ;
Kollhoff, Alexander ;
Wingo, Thomas S. ;
Dorbin, Cornelya D. ;
Qiu, Deqiang ;
Hu, William T. .
ALZHEIMERS RESEARCH & THERAPY, 2017, 9
[24]   Research Lumbar Punctures among African Americans and Caucasians: Perception Predicts Experience [J].
Howell, Jennifer C. ;
Parker, Monica W. ;
Watts, Kelly D. ;
Kollhoff, Alexander ;
Tsvetkova, Dobromira Z. ;
Hu, William T. .
Frontiers in Aging Neuroscience, 2016, 8
[25]  
Johnson Vanessa A, 2011, ABNF J, V22, P84
[26]   Challenging Assumptions About African American Participation in Alzheimer Disease Trials [J].
Kennedy, Richard E. ;
Cutter, Gary R. ;
Wang, Guoqiao ;
Schneider, Lon S. .
AMERICAN JOURNAL OF GERIATRIC PSYCHIATRY, 2017, 25 (10) :1150-1159
[27]  
Lang, 2014, J PARKINSONS DIS ALZ, V1, P4
[28]   African American Participation in Health-Related Research Studies: Indicators for Effective Recruitment [J].
Lang, Rosalyn ;
Kelkar, Vinaya A. ;
Byrd, Jennifer R. ;
Edwards, Christopher L. ;
Pericak-Vance, Margaret ;
Byrd, Goldie S. .
JOURNAL OF PUBLIC HEALTH MANAGEMENT AND PRACTICE, 2013, 19 (02) :110-118
[29]   A Model of Effects of Narrative as Culture-Centric Health Promotion [J].
Larkey, Linda K. ;
Hecht, Michael .
JOURNAL OF HEALTH COMMUNICATION, 2010, 15 (02) :114-135
[30]   Fundamental causes of barriers to participation in Alzheimer's clinical research among African Americans [J].
Lincoln, Karen D. ;
Chow, Tiffany ;
Gaines, Bryan F. ;
Fitzgerald, Terence .
ETHNICITY & HEALTH, 2021, 26 (04) :585-599