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A service‐oriented approach to clinical trial recruitment for dementia and brain health: Methods and case examples of MyAlliance for Brain Health.

Authors :
Vidoni, Eric D.
Swinford, Emma
Barton, Kelli
Perales‐Puchalt, Jaime
Niedens, C. Michelle
Lewandowski, Tina
Schwasinger‐Schmidt, Tiffany
Peltzer, Jill
Wurth, JoEllen
Berkley‐Patton, Jannette
Townley, Ryan A.
Moore, W. Todd
Shaw, Ashley R.
Key, Mickeal N.
Andrade, Erica
Robinson, Melissa
Sprague, Susan
Bondurant, Aiden
Brook, Debra
Freund, Jennifer
Source :
Alzheimer's & Dementia: Translational Research & Clinical Interventions; Apr2024, Vol. 10 Issue 2, p1-11, 11p
Publication Year :
2024

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. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
23528737
Volume :
10
Issue :
2
Database :
Complementary Index
Journal :
Alzheimer's & Dementia: Translational Research & Clinical Interventions
Publication Type :
Academic Journal
Accession number :
178095060
Full Text :
https://doi.org/10.1002/trc2.12475