Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.
Alzheimers Dement
; 20(2): 846-857, 2024 Feb.
Article
in En
| MEDLINE
| ID: mdl-37797205
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.Key words
Full text:
1
Database:
MEDLINE
Main subject:
Alzheimer Disease
/
Cognitive Dysfunction
Limits:
Aged
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Female
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Humans
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Male
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Middle aged
Language:
En
Year:
2024
Type:
Article