Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

Authors

Anna Aaronson, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Miriam T. Ashford, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Chengshi Jin, Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, USA.
Jessica Bride, Department of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Josephine Decker, Department of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Aaron DeNicola, Department of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Robert W. Turner, Department of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Catherine Conti, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Rachana Tank, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Diana Truran, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Monica R. Camacho, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Juliet Fockler, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Derek Flenniken, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Aaron Ulbricht, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Joshua D. Grill, Departments of Psychiatry & Human Behavior and Neurobiology & Behavior, Institute for Memory Impairments and Neurological Disorders, University of California Irvine, Irvine, California, USA.
Gil Rabinovici, Department of Radiology and Biomedical Imaging, University of California San Francisco, San Francisco, California, USA.
Maria C. Carrillo, Alzheimer's Association, Chicago, Illinois, USA.
R Scott Mackin, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Michael W. Weiner, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Rachel L. Nosheny, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.

Document Type

Journal Article

Publication Date

10-5-2023

Journal

Alzheimer's & dementia : the journal of the Alzheimer's Association

DOI

10.1002/alz.13492

Keywords

Alzheimer's disease; Brain Health Registry; aging research; dementia; diversity; dyadic report; internet; internet registry; online; remote assessment; subjective cognitive decline

Abstract

BACKGROUND: In Alzheimer's disease (AD) research, subjective reports of cognitive and functional decline from participant-study partner dyads is an efficient method of assessing cognitive impairment and clinical progression. METHODS: Demographics and subjective cognitive/functional decline (Everyday Cognition Scale [ECog]) scores from dyads enrolled in the Brain Health Registry (BHR) Study Partner Portal were analyzed. Associations between dyad characteristics and both ECog scores and study engagement were investigated. RESULTS: A total of 10,494 BHR participants (mean age = 66.9 ± 12.16 standard deviations, 67.4% female) have enrolled study partners (mean age = 64.3 ± 14.3 standard deviations, 49.3% female), including 8987 dyads with a participant 55 years of age or older. Older and more educated study partners were more likely to complete tasks and return for follow-up. Twenty-five percent to 27% of older adult participants had self and study partner-report ECog scores indicating a possible cognitive impairment. DISCUSSION: The BHR Study Partner Portal is a unique digital tool for capturing dyadic data, with high impact applications in the clinical neuroscience and AD fields. Highlights The Brain Health Registry (BHR) Study Partner Portal is a novel, digital platform of >10,000 dyads. Collection of dyadic online subjective cognitive and functional data is feasible. The portal has good usability as evidenced by positive study partner feedback. The portal is a potential scalable strategy for cognitive impairment screening in older adults.

APA Citation

Aaronson, Anna; Ashford, Miriam T.; Jin, Chengshi; Bride, Jessica; Decker, Josephine; DeNicola, Aaron; Turner, Robert W.; Conti, Catherine; Tank, Rachana; Truran, Diana; Camacho, Monica R.; Fockler, Juliet; Flenniken, Derek; Ulbricht, Aaron; Grill, Joshua D.; Rabinovici, Gil; Carrillo, Maria C.; Mackin, R Scott; Weiner, Michael W.; and Nosheny, Rachel L., "Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection" (2023). GW Authored Works. Paper 3633.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/3633

Department

Clinical Research and Leadership