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

• Published in: Alzheimer's & dementia 2024-02, Vol.20 (2), p.846-857
• Main Authors: 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., Nosheny, Rachel L.
• Format: Article
• Language: English
• Subjects: Activities of daily living; Age; Aged; aging research; Alzheimer Disease - diagnosis; Alzheimer's disease; Brain; Brain Health Registry; Brain research; Clinical assessment; Cognition & reasoning; Cognitive ability; Cognitive Dysfunction - diagnosis; Cognitive impairment; Data collection; Dementia; Demographics; diversity; dyadic report; Enrollments; Female; Functional impairment; Humans; Infrastructure; internet; internet registry; Male; Medical screening; Memory; Middle Aged; Neuropsychology; Older people; online; Questionnaires; Registries; remote assessment; subjective cognitive decline
• ISSN: 1552-5260; 1552-5279; 1552-5279
• DOI: 10.1002/alz.13492

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.