Literature DB >> 23728297

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

Tyler Schnieders1, Deborah D Danner, Caitlin McGuire, Flores Reynolds, Erin Abner.   

Abstract

Successful African American recruitment for aging research requires sensitivity to factors that influence participation. In this work, a structured face-to-face educational interview was used to recruit African Americans for a longitudinal aging study and to collect information about attitudes related to research. The interview was designed to build trust and respect for research and to educate participants about the need for minority participants. Of the 91 African Americans aged 65 and older who completed interviews, 65 (71%) agreed to participate in the longitudinal study and approximately half agreed to brain donation. Those who enrolled and consented to brain donation were more likely to consider benefit to themselves or direct family unit as the main motivator for participation (P < .01). The study also found a significant increase in agreement to brain donation across enrollment periods (P = .0005).

Entities:  

Keywords:  African American; barriers; brain donation; incentives; participation; research

Mesh:

Year:  2013        PMID: 23728297      PMCID: PMC3740062          DOI: 10.1177/1533317513488922

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


  20 in total

1.  Differences in attitudes toward organ donation among African Americans and whites in the United States.

Authors:  W J Minniefield; J Yang; P Muti
Journal:  J Natl Med Assoc       Date:  2001-10       Impact factor: 1.798

2.  Willingness to participate in clinical treatment research among older African Americans and Whites.

Authors:  Diane R Brown; Meral Topcu
Journal:  Gerontologist       Date:  2003-02

3.  Distrust, race, and research.

Authors:  Giselle Corbie-Smith; Stephen B Thomas; Diane Marie M St George
Journal:  Arch Intern Med       Date:  2002-11-25

4.  Alzheimer CSF biomarkers in routine clinical setting.

Authors:  F Tabaraud; J P Leman; A M Milor; J M Roussie; G Barrière; M Tartary; F Boutros-Toni; M Rigaud
Journal:  Acta Neurol Scand       Date:  2011-09-28       Impact factor: 3.209

5.  An ethno-medical perspective on research participation: a qualitative pilot study.

Authors:  José L Calderón; Richard S Baker; Horacio Fabrega; José G Conde; Ron D Hays; Erik Fleming; Keith Norris
Journal:  MedGenMed       Date:  2006-04-25

6.  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

7.  African Americans' views on research and the Tuskegee Syphilis Study.

Authors:  V S Freimuth; S C Quinn; S B Thomas; G Cole; E Zook; T Duncan
Journal:  Soc Sci Med       Date:  2001-03       Impact factor: 4.634

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

Review 9.  Dementia and race: are there differences between African Americans and Caucasians?

Authors:  T E Froehlich; S T Bogardus; S K Inouye
Journal:  J Am Geriatr Soc       Date:  2001-04       Impact factor: 5.562

10.  Reliability and validity of NINCDS-ADRDA criteria for Alzheimer's disease. The National Institute of Mental Health Genetics Initiative.

Authors:  D Blacker; M S Albert; S S Bassett; R C Go; L E Harrell; M F Folstein
Journal:  Arch Neurol       Date:  1994-12
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  14 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

2.  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

3.  Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.

Authors:  Linda Boise; Ladson Hinton; Howard J Rosen; Mary C Ruhl; Hiroko Dodge; Nora Mattek; Marilyn Albert; Andrea Denny; Joshua D Grill; Travonia Hughes; Jennifer H Lingler; Darby Morhardt; Francine Parfitt; Susan Peterson-Hazan; Viorela Pop; Tara Rose; Raj C Shah
Journal:  Alzheimer Dis Assoc Disord       Date:  2017 Apr-Jun       Impact factor: 2.703

4.  Perspective on the "African American participation in Alzheimer disease research: Effective strategies" workshop, 2018.

Authors:  Andrea Denny; Marissa Streitz; Kristin Stock; Joyce E Balls-Berry; Lisa L Barnes; Goldie S Byrd; Raina Croff; Sujuan Gao; Crystal M Glover; Hugh C Hendrie; William T Hu; Jennifer J Manly; Krista L Moulder; Susan Stark; Stephen B Thomas; Rachel Whitmer; Roger Wong; John C Morris; Jennifer H Lingler
Journal:  Alzheimers Dement       Date:  2020-08-17       Impact factor: 21.566

5.  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

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.  Community perceptions related to brain donation: Evidence for intervention.

Authors:  Catherine W Striley; Sadaf A Milani; Evan Kwiatkowski; Steven T DeKosky; Linda B Cottler
Journal:  Alzheimers Dement       Date:  2018-10-23       Impact factor: 21.566

Review 8.  Banking brains: a pre-mortem "how to" guide to successful donation.

Authors:  Daniel Trujillo Diaz; Nora C Hernandez; Etty P Cortes; Phyllis L Faust; Jean Paul G Vonsattel; Elan D Louis
Journal:  Cell Tissue Bank       Date:  2018-09-15       Impact factor: 1.522

9.  Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.

Authors:  Jessica Mozersky; Sarah Hartz; Erin Linnenbringer; Lillie Levin; Marissa Streitz; Kristin Stock; Krista Moulder; John C Morris
Journal:  J Alzheimers Dis       Date:  2021       Impact factor: 4.472

10.  Quantifying Recruitment Source and Participant Communication Preferences for Alzheimer's Disease Prevention Research.

Authors:  D Julbe-Delgado; J L O'Brien; R Abdulkarim; E M Hudak; H Maeda; J D Edwards
Journal:  J Prev Alzheimers Dis       Date:  2021
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