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Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease

Despite the disproportionate burden of Alzheimer’s disease in older adults of color, the scientific community continues to grapple with underrepresentation of racial and ethnic minorities in clinical research. Our Center of Excellence for Alzheimer’s Disease (CEAD) collaborated with a local communit...

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Autores principales: Stock, Miriam R., Ceïde, Mirnova E., Lounsbury, David W., Zwerling, Jessica
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9257777/
https://www.ncbi.nlm.nih.gov/pubmed/35836788
http://dx.doi.org/10.1017/cts.2022.388
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author Stock, Miriam R.
Ceïde, Mirnova E.
Lounsbury, David W.
Zwerling, Jessica
author_facet Stock, Miriam R.
Ceïde, Mirnova E.
Lounsbury, David W.
Zwerling, Jessica
author_sort Stock, Miriam R.
collection PubMed
description Despite the disproportionate burden of Alzheimer’s disease in older adults of color, the scientific community continues to grapple with underrepresentation of racial and ethnic minorities in clinical research. Our Center of Excellence for Alzheimer’s Disease (CEAD) collaborated with a local community partner to conduct community engagement (CE) studios to effectively involve our community of diverse older adults in the early planning stages of a clinical trial. Given the COVID-19 pandemic, the in-person studio format was adapted to allow for virtual, real-time participation. Our objective is to describe the process and feasibility of conducting virtual CE studios in an older adult population. Ninety percent of participants were non-Hispanic Black community-dwelling woman aged 60 years and older. The overall background and proposed clinical trial design was presented to the participants who then made recommendations regarding potential recruitment strategies, the use of culturally relevant language to describe the study, and logistical recommendations to improve participation and retention among community members. Our CEAD successfully conducted virtual CE studios during the COVID-19 pandemic, by partnering with a community-based organization, to engage community stakeholders about clinical trial design. CEADs are in a unique position to implement CE studios to better support patient access to clinical trials.
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spelling pubmed-92577772022-07-13 Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease Stock, Miriam R. Ceïde, Mirnova E. Lounsbury, David W. Zwerling, Jessica J Clin Transl Sci Special Communications Despite the disproportionate burden of Alzheimer’s disease in older adults of color, the scientific community continues to grapple with underrepresentation of racial and ethnic minorities in clinical research. Our Center of Excellence for Alzheimer’s Disease (CEAD) collaborated with a local community partner to conduct community engagement (CE) studios to effectively involve our community of diverse older adults in the early planning stages of a clinical trial. Given the COVID-19 pandemic, the in-person studio format was adapted to allow for virtual, real-time participation. Our objective is to describe the process and feasibility of conducting virtual CE studios in an older adult population. Ninety percent of participants were non-Hispanic Black community-dwelling woman aged 60 years and older. The overall background and proposed clinical trial design was presented to the participants who then made recommendations regarding potential recruitment strategies, the use of culturally relevant language to describe the study, and logistical recommendations to improve participation and retention among community members. Our CEAD successfully conducted virtual CE studios during the COVID-19 pandemic, by partnering with a community-based organization, to engage community stakeholders about clinical trial design. CEADs are in a unique position to implement CE studios to better support patient access to clinical trials. Cambridge University Press 2022-04-11 /pmc/articles/PMC9257777/ /pubmed/35836788 http://dx.doi.org/10.1017/cts.2022.388 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Special Communications
Stock, Miriam R.
Ceïde, Mirnova E.
Lounsbury, David W.
Zwerling, Jessica
Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title_full Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title_fullStr Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title_full_unstemmed Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title_short Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease
title_sort utilizing community engagement studios to inform clinical trial design at a center of excellence for alzheimer’s disease
topic Special Communications
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9257777/
https://www.ncbi.nlm.nih.gov/pubmed/35836788
http://dx.doi.org/10.1017/cts.2022.388
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