2023-09-28 14:46:10 +00:00
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abstract: 'Introduction Despite evidence that Hispanic/Latino populations are 1.5
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times more likely than non-Latino Whites to develop Alzheimer''s disease
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and related dementias (ADRD), Latinos are underrepresented in clinical
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trials testing treatments for ADRD. Data are needed on facilitators of
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ADRD clinical trial participation in Latinos. We leveraged in-depth
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qualitative methods to elucidate barriers and facilitators to
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participating in ADRD clinical trials in a large and diverse sample of
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Latinos; and to provide timely and actionable strategies to accelerate
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representation of Latinos in clinical trials on ADRD. Methods Data were
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collected in California between January 2019 and June 2020 from 25 focus
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groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with
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Latino adults ages 50+ (n = 75), and eight with caregivers of Latino
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older adults with ADRD (n = 52). Twelve community-based organization
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administrators were also interviewed. Transcripts of FGs and interviews
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were entered into Atlas.ti software. Three independent team members
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analyzed the transcripts with inductive/deductive qualitative content
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analysis. We triangulated data from stakeholder groups across sites, we
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used collaborative coding, and used the Consolidated Criteria for
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Reporting Qualitative Research. Results An overarching theme was a
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tension between wanting to learn more about ADRD and to participate in
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ADRD research but having limited awareness and opportunity. Five themes
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were identified: (1) remaining in limbo, (2) wanting information about
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ADRD, (3) wanting information on research about ADRD, (4) clearing
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researchers through trusted local organizations, and (5) practicing
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altruism through engagement in research opportunities. Discussion To
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increase representation of Latino communities in clinical trials on
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ADRD, bilingual information and education on ADRD and clinical trials
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needs to be better disseminated. Also, working with trusted local,
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regional, and national organizations can increase participation.
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Importantly, Latino participation can increase when research teams
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demonstrate altruistic actions and inform participants of public health
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reasons requiring their involvement. HIGHLIGHTS Participation in
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clinical trials on Alzheimer''s disease and related dementias (ADRD) is
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limited among Latinos/Hispanics. Knowing the high prevalence of ADRD in
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Latinos increases willingness to participate. Observing altruism from
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researchers increases willingness to participate. Invitations from
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multiple organizations increases willingness to participate. Researchers
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should include public health reasons requiring Latinos'' involvement.'
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affiliation: 'Marquez, DX (Corresponding Author), Univ Illinois, Dept Kinesiol \&
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Nutr, Rush Alzheimers Dis Ctr, 1919 W Taylor, Chicago, IL 60612 USA.
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Marquez, David X.; Jaldin, Michelle; Pinto, Juan, Univ Illinois, Dept Kinesiol \&
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Nutr, Rush Alzheimers Dis Ctr, 1919 W Taylor, Chicago, IL 60612 USA.
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Perez, Adriana; Johnson, Julene K., Univ Penn, Sch Nursing, Dept Family \& Community
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Hlth, Philadelphia, PA 19104 USA.
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Keiser, Sahru; Thi Tran; Martinez, Paula; Guerrero, Javier, Univ Calif San Francisco,
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Inst Hlth \& Aging, San Francisco, CA USA.
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Portacolone, Elena, Univ Calif San Francisco, Philip Lee Inst Hlth Policy Studies,
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San Francisco, CA 94143 USA.'
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article-number: e12331
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author: Marquez, David X. and Perez, Adriana and Johnson, Julene K. and Jaldin, Michelle
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and Pinto, Juan and Keiser, Sahru and Tran, Thi and Martinez, Paula and Guerrero,
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Javier and Portacolone, Elena
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author-email: marquezd@uic.edu
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author_list:
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- family: Marquez
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given: David X.
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- family: Perez
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given: Adriana
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- family: Johnson
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given: Julene K.
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- family: Jaldin
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given: Michelle
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- family: Pinto
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given: Juan
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- family: Keiser
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given: Sahru
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- family: Tran
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given: Thi
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- family: Martinez
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given: Paula
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- family: Guerrero
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given: Javier
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- family: Portacolone
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given: Elena
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da: '2023-09-28'
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doi: 10.1002/trc2.12331
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eissn: 2352-8737
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files: []
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journal: ALZHEIMERS \& DEMENTIA-TRANSLATIONAL RESEARCH \& CLINICAL INTERVENTIONS
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keywords: 'aged; Alzheimer''s disease and related dementias; clinical trials; focus
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groups; Hispanic; Latino'
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keywords-plus: QUALITATIVE RESEARCH; POPULATIONS; CHALLENGES; IMPACT; CARE
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language: English
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number: '1'
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number-of-cited-references: '37'
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papis_id: e5aa4c4505c61138369a4b4631667d2c
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ref: Marquez2022increasingengagement
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times-cited: '6'
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title: Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's
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disease and related dementias
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2023-10-01 08:15:07 +00:00
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type: article
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2023-09-28 14:46:10 +00:00
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unique-id: WOS:000830120200001
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usage-count-last-180-days: '2'
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usage-count-since-2013: '2'
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volume: '8'
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web-of-science-categories: Clinical Neurology; Neurosciences
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year: '2022'
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