A Service-Oriented Approach to Clinical Trial Recruitment for Dementia and Brain Health: Methods and Case Examples of MyAlliance for Brain Health

Authors

• Eric D Vidoni
• Emma Swinford
• Kelli Barton
• Jaime Perales-Puchalt
• C Michelle Niedens
• Tina Lewandowski
• Tiffany Schwasinger-Schmidt
• Jill Peltzer
• JoEllen Wurth
• Jannette Berkley-Patton
• Ryan A Townley
• W Todd Moore
• Ashley R Shaw
• Mickeal N Key
• Erica Andrade
• Melissa Robinson
• Susan Sprague
• Aiden Bondurant
• Debra Brook
• Jennifer Freund
• Jeffrey M Burns

Language

English

Publication Date

1-1-2024

Journal

Alzheimers & Dementia

DOI

10.1002/trc2.12475

PMID

38903984

PMCID

PMC11187743

PubMedCentral® Posted Date

6-20-2024

PubMedCentral® Full Text Version

Post-print

Abstract

Introduction: Recruitment of sufficient and diverse participants into clinical research for Alzheimer's disease and related dementias remains a formidable challenge. The primary goal of this manuscript is to provide an overview of an approach to diversifying research recruitment and to provide case examples of several methods for achieving greater diversity in clinical research enrollment.

Methods: The University of Kansas Alzheimer's Disease Research Center (KU ADRC) developed MyAlliance for Brain Health (MyAlliance), a service-oriented recruitment model. MyAlliance comprises a Primary Care Provider Network, a Patient and Family Network, and a Community Organization Network, each delivering tailored value to relevant parties while facilitating research referrals.

Results: We review three methods for encouraging increased diversity in clinical research participation. Initial outcomes reveal an increase in underrepresented participants from 17% to 27% in a research registry. Enrollments into studies supported by the research registry experienced a 51% increase in proportion of participants from underrepresented communities.

Discussion: MyAlliance shifts power, resources, and knowledge to community advocates, promoting brain health awareness and research participation, and demands substantial financial investment and administrative commitment. MyAlliance offers valuable lessons for building sustainable, community-centered research recruitment infrastructure, emphasizing the importance of localized engagement and cultural understanding.

Highlights: MyAlliance led to a significant increase in the representation of underrepresented racial and ethnic groups and individuals from rural areas.The service-oriented approach facilitated long-term community engagement and trust-building, extending partnerships between an academic medical center and community organizations.While effective, MyAlliance required substantial financial investment, with costs including infrastructure development, staff support, partner organization compensation, and promotional activities, underscoring the resource-intensive nature of inclusive research recruitment efforts.

Keywords

clinical research, community engagement, diversity, enrollment, recruitment

Published Open-Access

yes

Recommended Citation

Vidoni, Eric D; Swinford, Emma; Barton, Kelli; et al., "A Service-Oriented Approach to Clinical Trial Recruitment for Dementia and Brain Health: Methods and Case Examples of MyAlliance for Brain Health" (2024). Faculty, Staff and Student Publications. 1553.
https://digitalcommons.library.tmc.edu/uthsph_docs/1553