{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["Aaronson A"],"funding":["NIA NIH HHS","NIMH NIH HHS","NINDS NIH HHS","National Institutes of Health","Alzheimer&apos;s Association","Alzheimer's Association","NIH HHS"],"pagination":["846-857"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC10916998"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["20(2)"],"pubmed_abstract":["<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Discussion</h4>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."],"journal":["Alzheimer's & dementia : the journal of the Alzheimer's Association"],"pubmed_title":["Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection."],"pmcid":["PMC10916998"],"funding_grant_id":["BHR-16-459161","R33AG062867","R21 NS120629","U2C AG060426","K01 AG054762","K01AG055692","R33 AG062867","K01 AG055692","U01 AG057195","U24 AG057437","U19 AG024904","P30 AG062422","R01 MH117114","R01 AG053798","RF1 AG059009","R35 AG072362","F32AG072730-01","RF1 MH125928","F32AG072730‐01","R01 NS119651","R01 AG063954","BHR‐16‐459161","R01 MH101472","F32 AG072730"],"pubmed_authors":["Mackin RS","Ashford MT","Ulbricht A","Turner RW","Decker J","Truran D","Aaronson A","Fockler J","Camacho MR","Rabinovici G","DeNicola A","Conti C","Weiner MW","Jin C","Grill JD","Nosheny RL","Tank R","Flenniken D","Bride J","Carrillo MC"],"additional_accession":[]},"is_claimable":false,"name":"Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.","description":"<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Discussion</h4>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.","dates":{"release":"2024-01-01T00:00:00Z","publication":"2024 Feb","modification":"2026-04-18T11:15:48.349Z","creation":"2026-04-07T14:34:24.05Z"},"accession":"S-EPMC10916998","cross_references":{"pubmed":["37797205"],"doi":["10.1002/alz.13492"]}}