abstract: 'Introduction Despite evidence that Hispanic/Latino populations are 1.5

  times more likely than non-Latino Whites to develop Alzheimer''s disease

  and related dementias (ADRD), Latinos are underrepresented in clinical

  trials testing treatments for ADRD. Data are needed on facilitators of

  ADRD clinical trial participation in Latinos. We leveraged in-depth

  qualitative methods to elucidate barriers and facilitators to

  participating in ADRD clinical trials in a large and diverse sample of

  Latinos; and to provide timely and actionable strategies to accelerate

  representation of Latinos in clinical trials on ADRD. Methods Data were

  collected in California between January 2019 and June 2020 from 25 focus

  groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with

  Latino adults ages 50+ (n = 75), and eight with caregivers of Latino

  older adults with ADRD (n = 52). Twelve community-based organization

  administrators were also interviewed. Transcripts of FGs and interviews

  were entered into Atlas.ti software. Three independent team members

  analyzed the transcripts with inductive/deductive qualitative content

  analysis. We triangulated data from stakeholder groups across sites, we

  used collaborative coding, and used the Consolidated Criteria for

  Reporting Qualitative Research. Results An overarching theme was a

  tension between wanting to learn more about ADRD and to participate in

  ADRD research but having limited awareness and opportunity. Five themes

  were identified: (1) remaining in limbo, (2) wanting information about

  ADRD, (3) wanting information on research about ADRD, (4) clearing

  researchers through trusted local organizations, and (5) practicing

  altruism through engagement in research opportunities. Discussion To

  increase representation of Latino communities in clinical trials on

  ADRD, bilingual information and education on ADRD and clinical trials

  needs to be better disseminated. Also, working with trusted local,

  regional, and national organizations can increase participation.

  Importantly, Latino participation can increase when research teams

  demonstrate altruistic actions and inform participants of public health

  reasons requiring their involvement. HIGHLIGHTS Participation in

  clinical trials on Alzheimer''s disease and related dementias (ADRD) is

  limited among Latinos/Hispanics. Knowing the high prevalence of ADRD in

  Latinos increases willingness to participate. Observing altruism from

  researchers increases willingness to participate. Invitations from

  multiple organizations increases willingness to participate. Researchers

  should include public health reasons requiring Latinos'' involvement.'
affiliation: 'Marquez, DX (Corresponding Author), Univ Illinois, Dept Kinesiol \&
  Nutr, Rush Alzheimers Dis Ctr, 1919 W Taylor, Chicago, IL 60612 USA.

  Marquez, David X.; Jaldin, Michelle; Pinto, Juan, Univ Illinois, Dept Kinesiol \&
  Nutr, Rush Alzheimers Dis Ctr, 1919 W Taylor, Chicago, IL 60612 USA.

  Perez, Adriana; Johnson, Julene K., Univ Penn, Sch Nursing, Dept Family \& Community
  Hlth, Philadelphia, PA 19104 USA.

  Keiser, Sahru; Thi Tran; Martinez, Paula; Guerrero, Javier, Univ Calif San Francisco,
  Inst Hlth \& Aging, San Francisco, CA USA.

  Portacolone, Elena, Univ Calif San Francisco, Philip Lee Inst Hlth Policy Studies,
  San Francisco, CA 94143 USA.'
article-number: e12331
author: Marquez, David X. and Perez, Adriana and Johnson, Julene K. and Jaldin, Michelle
  and Pinto, Juan and Keiser, Sahru and Tran, Thi and Martinez, Paula and Guerrero,
  Javier and Portacolone, Elena
author-email: marquezd@uic.edu
author_list:
- family: Marquez
  given: David X.
- family: Perez
  given: Adriana
- family: Johnson
  given: Julene K.
- family: Jaldin
  given: Michelle
- family: Pinto
  given: Juan
- family: Keiser
  given: Sahru
- family: Tran
  given: Thi
- family: Martinez
  given: Paula
- family: Guerrero
  given: Javier
- family: Portacolone
  given: Elena
da: '2023-09-28'
doi: 10.1002/trc2.12331
eissn: 2352-8737
files: []
journal: ALZHEIMERS \& DEMENTIA-TRANSLATIONAL RESEARCH \& CLINICAL INTERVENTIONS
keywords: 'aged; Alzheimer''s disease and related dementias; clinical trials; focus

  groups; Hispanic; Latino'
keywords-plus: QUALITATIVE RESEARCH; POPULATIONS; CHALLENGES; IMPACT; CARE
language: English
number: '1'
number-of-cited-references: '37'
papis_id: e5aa4c4505c61138369a4b4631667d2c
ref: Marquez2022increasingengagement
times-cited: '6'
title: Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's
  disease and related dementias
type: article
unique-id: WOS:000830120200001
usage-count-last-180-days: '2'
usage-count-since-2013: '2'
volume: '8'
web-of-science-categories: Clinical Neurology; Neurosciences
year: '2022'