Association between Trust of Researchers and Willingness to Participate in Alzheimer’s Disease Biomarker Research

Published in the Alzheimer’s and Dementia. Here is a link to the article.

Regenstrief Institute authors: Regenstrief Research Scientist Johanne Eliacin, PhD, and Regenstrief Affiliate Scientist Sophia Wang, M.D.

The study found that trust in researchers is the strongest factor influencing whether older adults are willing to participate in Alzheimer’s disease and related dementia (ADRD) biomarker research. In a survey of 399 older adults with no previous research involvement, those who expressed very high trust were significantly less hesitant to take part in studies, even after accounting for differences in age, education, race and knowledge of ADRD.

Participants with higher trust were more willing to undergo procedures such as brain scans, blood draws and genetic testing, and they showed greater interest in receiving personal results from memory and brain imaging tests. Those with lower trust were more likely to have concerns about privacy and the risks of research procedures.

The study also revealed that simply knowing more about ADRD did not increase willingness to participate, underscoring trust as an independent and essential factor. Offering personal health results was more effective at encouraging participation among those who already had higher trust, while incentives like travel vouchers or standard lab results had little impact.

These findings highlight the critical role of building trust between researchers and communities to increase participation in studies that are essential for advancing early detection and treatment of ADRD. Strengthening trust through transparent communication and strong community partnerships may help accelerate progress in developing effective therapies.

Authors:

Laureen Raelly-Muze^1,2 Taylor Etchison² Adele Crouch³ Johanne Eliacin^2,4,5,6,7

Angelina Polsinelli^2,8 Sujuan Gao^2,9 Sarah Van Heiden² Joseph Asper²

Caprice Elliott² Ralph Richards² Mollie Richards² Christopher Campbell²

Hugh Hendrie² Pamella Shaw² Omolola Adeoye-Olatunde¹⁰

Shannon Risacher^2,11 Andrew Saykin^2,8,12,13 Sophia Wang^2,14

Affiliations:

¹University of Texas Health San Antonio, San Antonio, Texas, USA

²Indiana Alzheimer’s Disease Research Center, Indianapolis, Indiana, USA

³Indiana University School of Nursing Science of Nursing Care Department, Indianapolis, Indiana, USA

⁴VA HSR&D Center for Health Information and Communication, Roudebush VA Medical Center, Indianapolis, Indiana, USA

⁵Regenstrief Institute, Center for Health Services Research, Indianaplis, Indiana, USA

⁶Women’s Health Sciences Division, National Center for PTSD, VA Boston Healthcare System, Boston, Massachusetts, USA

⁷Department of Internal General Medicine, Indiana University School of Medicine, Indianapolis, Indiana, USA

⁸Department of Neurology, Indiana University School of Medicine, Indianapolis, Indiana, USA

⁹Department of Biostatistics and Health Data Science, Indiana University School of Medicine, Indianapolis, Indiana, USA

¹⁰Department of Pharmacy Practice, Purdue University College of Pharmacy, Indianapolis, Indiana, USA

¹¹Department of Radiology and Imaging Sciences, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA

¹²Department of Radiology and Imaging Sciences, Indiana University School of Medicine, Indianapolis, Indiana, USA

¹³Indiana University Network Science Institute, Bloomington, Indiana, USA

¹⁴Department of Psychiatry, Indiana University School of Medicine, Indianapolis, Indiana, USA