Development of a Mobile-First Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer’s Disease Prevention Studies - 21/11/24

Doi : 10.14283/jpad.2023.86 
R. Aggarwal 1, E. Sidnam-Mauch 2, D. Neffa-Creech 3, A. Plant 3, E. Williams 4, E. Shami 4, U. Menon 5, S. George 6, 7, Jessica Langbaum 8,
1 Provoc, Washington, District of Columbia, USA 
2 School of Computing, Clemson University, Clemson, SC, USA 
3 Sentient Research, West Covina, CA, USA 
4 Marketade, Bethesda, MD, USA 
5 University of South Florida Health College of Nursing, Tampa, FL, USA 
6 Department of Preventive and Social Medicine, Charles R. Drew University of Medicine and Science, Los Angeles, CA, USA 
7 Department of Community Health Sciences, UCLA, Los Angeles, CA, USA 
8 Banner Alzheimer’s Institute, 901 E. Willetta Street, 85006, Phoenix, AZ, USA 

j jessica.langbaum@bannerhealth.com jessica.langbaum@bannerhealth.com

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Abstract

Background

Web-based participant recruitment registries can be useful tools for accelerating enrollment into studies, but existing Alzheimer’s disease (AD)-focused recruitment registries have had limited success enrolling individuals from underrepresented racial and ethnic groups. Designing these registries to meet the needs of individuals from these communities, including designing mobile-first, may facilitate improvement in the enrollment of underrepresented groups.

Objectives

Evaluate the usability of a prototype mobile-first participant recruitment registry for AD prevention studies; assess users’ perceptions of and willingness to sign up for the registry.

Design and Setting

Quantitative usability testing and an online survey; online setting.

Participants

We recruited 1,358 adults ages 45–75 who self-reported not having a diagnosis of mild cognitive impairment, AD, or other forms of dementia (Study 1: n=589, Study 2: n=769). Black/African American and Hispanic/Latino participants were specifically recruited, including those with lower health literacy.

Methods and Measurements

Study 1 measures the prototype’s usability through observed task success rates, task completion times, and responses to the System Usability Scale. Study 2 uses an online survey to collect data on perceptions of and willingness to sign up for the mobile-first registry.

Results

Study 1 findings show the prototype mobile-first recruitment registry website demonstrates high usability and is equally usable for Black / African American, Hispanic/Latino, and White user groups. Survey results from Study 2 indicate that users from underrepresented communities understand the registry’s purpose and content and express willingness to sign up for the registry on a mobile device.

Conclusions

Designing mobile-first participant recruitment registries based on feedback from underrepresented communities may result in more sign-ups by individuals from minoritized communities.

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Key words : Alzheimer’s disease prevention, underrepresented communities, participant recruitment registry, user research


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Vol 10 - N° 4

P. 857-864 - Novembre 2023 Ritorno al numero
Articolo precedente Articolo precedente
  • The Community Engaged Digital Alzheimer’s Research (CEDAR) Study: A Digital Intervention to Increase Research Participation of Black American Participants in the Brain Health Registry
  • M.R. Mindt, M.T. Ashford, D. Zhu, H. Cham, A. Aaronson, C. Conti, X. Deng, R. Alaniz, J. Sorce, C. Cypress, P. Griffin, D. Flenniken, M. Camacho, J. Fockler, D. Truran, R.S. Mackin, C. Hill, M.W. Weiner, D. Byrd, R.W. Turner, Rachel L. Nosheny
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  • Understanding Barriers and Facilitators to Signing Up for a Mobile-Responsive Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer’s Disease Prevention Studies
  • D. Neffa-Creech, R. Aggarwal, C. Stowell, U. Menon, S. George, A. Plant, Jessica Langbaum

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