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View article: Digital efforts in Spanish for enrolling Latino adults in the Brain Health Registry
Digital efforts in Spanish for enrolling Latino adults in the Brain Health Registry Open
INTRODUCTION Previous culturally informed digital inclusion efforts in English effectively enrolled Latino adults into the Brain Health Registry (BHR), an online Alzheimer's disease (AD)–related registry. Because these efforts were in Engl…
View article: Self- and Informant-Report Cognitive Decline Discordance and Mild Cognitive Impairment Diagnosis
Self- and Informant-Report Cognitive Decline Discordance and Mild Cognitive Impairment Diagnosis Open
Importance Subjective report of cognitive and functional decline from participant–study partner dyads can efficiently assess risk of cognitive impairment and clinical progression. Accuracy of self-report subjective cognitive decline may be…
View article: Evaluating the Accuracy of Web-Based and In-Clinic Subjective Cognitive Decline Assessments in Detecting Cognitive Impairment: Multicohort Study
Evaluating the Accuracy of Web-Based and In-Clinic Subjective Cognitive Decline Assessments in Detecting Cognitive Impairment: Multicohort Study Open
Background Scalable tools to efficiently identify individuals likely to have cognitive impairment (CI) are critical in the Alzheimer disease and related dementias field. The Everyday Cognition scale (ECog) and its short form (ECog12) asses…
View article: Community‐engaged efforts to increase retention of Black American online registry participants
Community‐engaged efforts to increase retention of Black American online registry participants Open
INTRODUCTION Many longitudinal Alzheimer's disease studies fail to retain Black American adults once enrolled. This limits the generalizability of research findings. METHODS The Community‐Engaged Digital Alzheimer's Research (CEDAR) study …
View article: Subjective cognitive decline predicts longitudinal neuropsychological test performance in an unsupervised online setting in the Brain Health Registry
Subjective cognitive decline predicts longitudinal neuropsychological test performance in an unsupervised online setting in the Brain Health Registry Open
Backgrounds Digital, online assessments are efficient means to detect early cognitive decline, but few studies have investigated the relationship between remotely collected subjective cognitive change and cognitive decline. We hypothesized…
View article: Evaluating the Accuracy of Online and In-Clinic Subjective Cognitive Decline Assessments in Detecting Cognitive Impairment (Preprint)
Evaluating the Accuracy of Online and In-Clinic Subjective Cognitive Decline Assessments in Detecting Cognitive Impairment (Preprint) Open
BACKGROUND Scalable tools to efficiently identify individuals likely to have cognitive impairment (CI) are critical in the Alzheimer’s disease and related dementias field. The Everyday Cognition scale (ECog) and its short form (ECog12) as…
View article: The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials
The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials Open
The Alzheimer's Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities, to ensure the success and maximize the impact of ADNI in advancing Alzheimer's disease (AD) research and clinical tria…
View article: Performance of a Short Version of the Everyday Cognition Scale (ECog-12) to Detect Cognitive Impairment
Performance of a Short Version of the Everyday Cognition Scale (ECog-12) to Detect Cognitive Impairment Open
Study partner-reported ECog scores performed better than self-reported ECog-12 in differentiating cognitive statuses, and a higher study partner reported ECog score was a higher prognostic risk for CI. A memory concern question could enhan…
View article: Remote olfactory assessment using the NIH Toolbox Odor Identification test and the brain health registry
Remote olfactory assessment using the NIH Toolbox Odor Identification test and the brain health registry Open
Background Early identification of deficits in our ability to perceive odors is important as many normal (i.e., aging) and pathological (i.e., sinusitis, viral, neurodegeneration) processes can result in diminished olfactory function. To r…
View article: Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions
Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions Open
INTRODUCTION This study aimed to understand whether older adults’ longitudinal completion of assessments in an online Alzheimer's disease and related dementias (ADRD)–related registry is influenced by self‐reported medical conditions. METH…
View article: Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection
Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection Open
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 Demogra…
View article: Evaluation of the Electronic Clinical Dementia Rating for Dementia Screening
Evaluation of the Electronic Clinical Dementia Rating for Dementia Screening Open
Importance The Clinical Dementia Rating (CDR) is a well-validated instrument widely used to detect and stage dementia due to Alzheimer disease. The digital Electronic Clinical Dementia Rating (eCDR) can be remotely self-administered and au…
View article: Unsupervised Online Paired Associates Learning Task from the Cambridge Neuropsychological Test Automated Battery (CANTAB®) in the Brain Health Registry
Unsupervised Online Paired Associates Learning Task from the Cambridge Neuropsychological Test Automated Battery (CANTAB®) in the Brain Health Registry Open
Our findings support moderate feasibility, good usability, and construct validity of cross-sectional Paired Associates Learning in an unsupervised online registry, but also highlight the need to make the assessment more inclusive and acces…
View article: Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer's Research (CEDAR) Study
Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer's Research (CEDAR) Study Open
The results of our study can inform the development of culturally-responsive registry features and engagement efforts to improve inclusion and participation of Black adults in online ADRD research. Providing participants with feedback abou…
View article: Digital culturally tailored marketing for enrolling Latino participants in a web‐based registry: Baseline metrics from the Brain Health Registry
Digital culturally tailored marketing for enrolling Latino participants in a web‐based registry: Baseline metrics from the Brain Health Registry Open
Introduction This culturally tailored enrollment effort aims to determine the feasibility of enrolling 5000 older Latino adults from California into the Brain Health Registries (BHR) over 2.25 years. Methods This paper describes (1) the de…
View article: Remote blood collection from older adults in the Brain Health Registry for plasma biomarker and genetic analysis
Remote blood collection from older adults in the Brain Health Registry for plasma biomarker and genetic analysis Open
Introduction Use of online registries to efficiently identify older adults with cognitive decline and Alzheimer's disease (AD) is an approach with growing evidence for feasibility and validity. Linked biomarker and registry data can facili…
View article: Reliability and Validity of a Home-Based Self-Administered Computerized Test of Learning and Memory Using Speech Recognition
Reliability and Validity of a Home-Based Self-Administered Computerized Test of Learning and Memory Using Speech Recognition Open
Unsupervised computerized tests of cognition, particularly word list learning and memory tests that use speech recognition, have significant potential for large scale early detection and long-term tracking of cognitive decline due to AD.
View article: Machine learning approaches to predicting amyloid status using data from an online research and recruitment registry: The Brain Health Registry
Machine learning approaches to predicting amyloid status using data from an online research and recruitment registry: The Brain Health Registry Open
Introduction This study investigated the extent to which subjective and objective data from an online registry can be analyzed using machine learning methodologies to predict the current brain amyloid beta (Aβ) status of registry participa…
View article: Brain health registry GenePool study: A novel approach to online genetics research
Brain health registry GenePool study: A novel approach to online genetics research Open
Introduction Remote data collection, including the establishment of online registries, is a novel approach to efficiently identify risk for cognitive decline and Alzheimer's disease (AD) in older adults, with growing evidence for feasibili…
View article: Remote olfactory assessment using the NIH Toolbox Odor Identification Test and the Brain Health Registry
Remote olfactory assessment using the NIH Toolbox Odor Identification Test and the Brain Health Registry Open
Objective: Early identification of deficits in our ability to perceive odors is important as many normal (i.e., aging) and pathological (i.e., sinusitis, viral, neurodegeneration) processes can result in diminished olfactory function. Howe…
View article: Validation of online functional measures in cognitively impaired older adults
Validation of online functional measures in cognitively impaired older adults Open
Introduction Assessment of functional status is associated with risk of cognitive decline and diagnosis of dementia, and can be assessed by participants and study partners (SPs). Methods In 770 older adults enrolled in the Imaging Dementia…
View article: Effects of sex, race, ethnicity, and education on online aging research participation
Effects of sex, race, ethnicity, and education on online aging research participation Open
Introduction This study aimed to identify the relationship of sociodemographic variables with older adults participation in an online registry for recruitment and longitudinal assessment in cognitive aging. Methods Using Brain Health Regis…
View article: Predicting amyloid status using self‐report information from an online research and recruitment registry: The Brain Health Registry
Predicting amyloid status using self‐report information from an online research and recruitment registry: The Brain Health Registry Open
The findings suggest that a novel, online approach could aid in Aβ prediction.
View article: Unsupervised online neuropsychological test performance for individuals with mild cognitive impairment and dementia: Results from the Brain Health Registry
Unsupervised online neuropsychological test performance for individuals with mild cognitive impairment and dementia: Results from the Brain Health Registry Open
Introduction The purpose of this study is to compare online neuropsychological test performance of older adults across self‐reported diagnoses of being cognitively normal, mild cognitive impairment, and dementia due to Alzheimer's disease …
View article: Online study partner‐reported cognitive decline in the Brain Health Registry
Online study partner‐reported cognitive decline in the Brain Health Registry Open
Introduction Methods for efficiently identifying cognitive decline and Alzheimer's disease (AD) are a critical unmet need. The goal of this work was to validate novel online study partner (SP)‐reported outcomes to identify cognitive declin…