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Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research

INTRODUCTION: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. METHODS: Three groups of Black and White participants with and without prior research advocacy or participation were interv...

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Autores principales: Eliacin, Johanne, Hathaway, Elizabeth, Wang, Sophia, O'Connor, Caitlin, Saykin, Andrew J., Cameron, Kenzie A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9728547/
https://www.ncbi.nlm.nih.gov/pubmed/36505397
http://dx.doi.org/10.1002/dad2.12384
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author Eliacin, Johanne
Hathaway, Elizabeth
Wang, Sophia
O'Connor, Caitlin
Saykin, Andrew J.
Cameron, Kenzie A.
author_facet Eliacin, Johanne
Hathaway, Elizabeth
Wang, Sophia
O'Connor, Caitlin
Saykin, Andrew J.
Cameron, Kenzie A.
author_sort Eliacin, Johanne
collection PubMed
description INTRODUCTION: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. METHODS: Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. RESULTS: Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. DISCUSSION: Participants’ comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. HIGHLIGHTS: Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation. Concerns about research diversity influence research participation decisions. Research test disclosure may affect research participation and retention.
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spelling pubmed-97285472022-12-08 Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research Eliacin, Johanne Hathaway, Elizabeth Wang, Sophia O'Connor, Caitlin Saykin, Andrew J. Cameron, Kenzie A. Alzheimers Dement (Amst) Research Articles INTRODUCTION: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. METHODS: Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. RESULTS: Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. DISCUSSION: Participants’ comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. HIGHLIGHTS: Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation. Concerns about research diversity influence research participation decisions. Research test disclosure may affect research participation and retention. John Wiley and Sons Inc. 2022-12-07 /pmc/articles/PMC9728547/ /pubmed/36505397 http://dx.doi.org/10.1002/dad2.12384 Text en © 2022 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Research Articles
Eliacin, Johanne
Hathaway, Elizabeth
Wang, Sophia
O'Connor, Caitlin
Saykin, Andrew J.
Cameron, Kenzie A.
Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title_full Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title_fullStr Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title_full_unstemmed Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title_short Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
title_sort factors influencing the participation of black and white americans in alzheimer's disease biomarker research
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9728547/
https://www.ncbi.nlm.nih.gov/pubmed/36505397
http://dx.doi.org/10.1002/dad2.12384
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