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INTRODUCTION: We evaluated preliminary feasibility of a digital, culturally‐informed approach to recruit and screen participants for the Alzheimer's Disease Neuroimaging Initiative (ADNI4). METHODS: Participants were recruited using digital advertising and completed digital surveys (e.g., demographics, medical exclusion criteria, 12‐item Everyday Cognition Scale [ECog‐12]), Novoic Storyteller speech‐based cognitive test). Completion rates and assessment performance were compared between underrepresented populations (URPs: individuals from ethnoculturally minoritized or low education backgrounds) and non‐URPs. RESULTS: Of 3099 participants who provided contact information, 654 enrolled in the cohort, and 595 completed at least one assessment. Two hundred forty‐seven participants were from URPs. Of those enrolled, 465 met ADNI4 inclusion criteria and 237 evidenced possible cognitive impairment from ECog‐12 or Storyteller performance. URPs had lower ECog and Storyteller completion rates. Scores varied by ethnocultural group and educational level. DISCUSSION: Preliminary results demonstrate digital recruitment and screening assessment of an older diverse cohort, including those with possible cognitive impairment, are feasible. Improving engagement and achieving educational diversity are key challenges. Highlights: A total of 654 participants enrolled in a digital cohort to facilitate ADNI4 recruitment.Culturally‐informed digital ads aided enrollment of underrepresented populations.From those enrolled, 42% were from underrepresented ethnocultural and educational groups.Digital screening tools indicate > 50% of participants likely cognitively impaired.Completion rates and assessment performance vary by ethnocultural group and education. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. METHODS: Brain Health Registry (BHR) is an online cognitive aging and ADRD‐related research registry that includes longitudinal health and cognitive assessments. Using logistic regressions, we examined associations between longitudinal registry completion outcomes and self‐reported (1) number of medical conditions and (2) eight defined medical condition groups (cardiovascular, metabolic, immune system, ADRD, current psychiatric, substance use/abuse, acquired, other specified conditions) in adults aged 55+ (N = 23,888). Longitudinal registry completion outcomes were assessed by the completion of the BHR initial questionnaire (first questionnaire participants see at each visit) at least twice and completion of a cognitive assessment (Cogstate Brief Battery) at least twice. Models included ethnocultural identity, education, age, and subjective memory concern as covariates. RESULTS: We found that the likelihood of longitudinally completing the initial questionnaire was negatively associated with reporting a diagnosis of ADRD and current psychiatric conditions but was positively associated with reporting substance use/abuse and acquired medical conditions. The likelihood of longitudinally completing the cognitive assessment task was negatively associated with number of reported medical conditions, as well as with reporting cardiovascular conditions, ADRD, and current psychiatric conditions. Previously identified associations between ethnocultural identity and longitudinal assessment completion in BHR remained after accounting for the presence of medical conditions. DISCUSSION: This post hoc analysis provides novel, initial evidence that older adults' completion of longitudinal assessments in an online registry is associated with the number and types of participant‐reported medical conditions. Our findings can inform future efforts to make online studies with longitudinal health and cognitive assessments more usable for older adults with medical conditions. The results need to be interpreted with caution due to selection biases, and the under‐inclusion of minoritized communities. [ABSTRACT FROM AUTHOR]

Background: Early, efficient identification of Alzheimer's disease (AD) risk is a critical need. Dyadic subjective report from a participant and an informant/study partner (SP) who knows the participant well, may be a reliable and accurate method for assessing AD risk. Method: The Caregiver and Study Partner Portal within the Brain Health Registry (BHR; an online registry and cohort) is a scalable tool for remotely obtaining dyadic data. All BHR participants are asked to identify a potential SP, who is invited to separately enroll and consent. SPs complete a demographic survey and questionnaires pertaining to cognition, behavioral symptoms, activities of daily living, and the health of the participant. Participants and SPs both complete an online adaptation of the Everyday Cognition Scale (ECog) to assess subjective cognitive change. We analyzed demographic characteristics of the dyads enrolled in BHR and measured correlation between SP and self‐report ECog scores. We used ADNI ECog data to estimate cut points likely to indicate cognitive impairment (1.43 for SP‐report scores and 1.65 for self‐report scores) and determined the number of BHR participants who are possibly impaired based on these cut points. Result: Out of 93,134 BHR participants, 10,494 (11.3%) have an enrolled study partner (Figure 1). The mean SP‐report ECog score is 1.35±0.50 and mean self‐report ECog score is 1.46±0.47. SP and self‐report ECog scores are correlated (r = 0.47, p < 0.001) (Figure 1). Out of 8,374 participants with available SP‐report ECog scores, 2,194 (26.2%) are possibly impaired. Out of 10,018 participants with available self‐report ECog scores, 2,384 (23.8%) of participants are possibly impaired (Figure 2). Conclusion: These findings demonstrate the feasibility of collecting online, dyad‐report demographic and subjective cognitive change data from a large cohort of participant‐SP dyads. The study failed to recruit an ethnoculturally and educationally diverse cohort of dyads. The positive correlation between self‐ and SP‐report ECog scores suggests dyad concordance in subjective report of change. Future efforts will focus on improving study partner enrollment and BHR task completion, increasing dyad diversity, and investigating the ability of remote dyadic measures to track cognitive decline and clinical progression along the AD continuum. [ABSTRACT FROM AUTHOR]

Introduction: Remote, internet‐based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimer's disease (AD) clinical trials and observational studies. Methods: The Brain Health Registry (BHR) is an online registry that includes longitudinal assessments including self‐ and study partner‐report questionnaires and neuropsychological tests. New initiatives aim to increase inclusion and engagement of commonly underincluded communities using digital, community‐engaged research strategies. New features include multilingual support and biofluid collection capabilities. Results: BHR includes > 100,000 participants. BHR has made over 259,000 referrals resulting in 25,997 participants enrolled in 30 aging and AD studies. In addition, 28,278 participants are coenrolled in BHR and other studies with data linkage among studies. Data have been shared with 28 investigators. Recent efforts have facilitated the enrollment and engagement of underincluded ethnocultural communities. Discussion: The major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability. Highlights: Brain Health Registry (BHR) is an online, longitudinal platform of > 100,000 members.BHR made > 259,000 referrals, which enrolled 25,997 participants in 32 studies.New efforts increased enrollment and engagement of underincluded communities in BHR.The major advantages of the BHR approach are scalability and accessibility.BHR provides a unique adjunct for clinical neuroscience research. [ABSTRACT FROM AUTHOR]

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 development and deployment of culturally tailored BHR websites and digital ads, in collaboration with a Latino community science partnership board and a marketing company; (2) an interim feasibility analysis of the enrollment efforts and numbers, and participant characteristics (primary aim); as well as (3) an exploration of module completion and a preliminary efficacy evaluation of the culturally tailored digital efforts compared to BHR's standard non–culturally tailored efforts (secondary aim). Results: In 12.5 months, 3603 older Latino adults were enrolled (71% of the total California Latino BHR initiative enrollment goal). Completion of all BHR modules was low (6%). Discussion: Targeted ad placement, culturally tailored enrollment messaging, and culturally tailored BHR websites increased enrollment of Latino participants in BHR, but did not translate to increased module completion. Highlights: Culturally tailored social marketing and website improvements were implemented.The efforts enrolled 5662 Latino individuals in 12.5 months.The number of Latino Brain Health Registry (BHR) participants increased by 122.7%.We failed to adequately enroll female Latinos and Latinos with lower education.Future work will evaluate effects of a newly released Spanish‐language BHR website. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to evaluate the feasibility and usability of collecting data from an unsupervised online version of the Paired Associates Learning (PAL) task from the Cambridge Neuropsychological Test Automated Battery (CANTAB™) in adults enrolled in the Brain Health Registry (BHR). Method: BHR is an online cognitive aging registry for referral and longitudinal unsupervised assessment. The PAL assesses visual associative learning and memory and was administered in BHR between 03/2021‐07/2022. PAL variables included in this analysis were 'Memory Score' (patterns correctly identified at first attempt for each difficulty level) and 'Total Errors', adjusted for level reached. We analyzed PAL task completion rate and characteristics of PAL completers and used linear regressions to assess whether cross‐sectional PAL Memory Score and PAL Total Errors were associated with participant data (age, gender, education, self‐ and study partner‐reported cognitive complaints (Everyday Cognition scale (ECog)), self‐reported memory concern, and self‐reported depressive symptom severity (PHQ‐9), self‐report of Mild Cognitive Impairment (MCI)). Result: As of July 2022, 14,520 participants aged 18+ years have completed PAL at least once. Participants were on average 66.3 years old (SD = 11.3), 72.4% female gender, 92.8% self‐identified as White, and had a mean of 16.6 years of education (SD = 2.27). BHR received 374 requests for study support regarding PAL, of which 36% (135) were related to device compatibility. Mean PAL scores were similar to those of previous, supervised studies (Figure 1). Worse PAL performance was significantly associated with being older, female gender, having less education, more self‐ and study partner‐reported ECog, self‐reported memory concern, more depressive symptoms, and self‐report of MCI (Table 1). Conclusion: Our findings provide evidence for the feasibility of collecting PAL data in an unsupervised online setting and construct validity of cross‐sectional BHR PAL. In terms of usability, there was a minimal need for support. Future studies will investigate the predictive value of BHR PAL in identifying adults with self‐reported MCI, longitudinal BHR PAL performance and associations with in‐clinic assessments and Alzheimer's disease biomarkers. Our sample lacked diversity. Therefore, a future direction is to increase accessibility of PAL to ethnoculturally and socioeconomically diverse communities. [ABSTRACT FROM AUTHOR]

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 facilitate AD clinical research. Methods: We collected blood for plasma biomarker and genetic analysis from older adult Brain Health Registry (BHR) participants, evaluated feasibility, and estimated associations between demographic variables and study participation. Results: Of 7150 participants invited to the study, 864 (12%) enrolled and 629 (73%) completed remote blood draws. Participants reported high study acceptability. Those from underrepresented ethnocultural and educational groups were less likely to participate. Discussion: This study demonstrates the challenges of remote blood collection from a large representative sample of older adults. Remote blood collection from > 600 participants within a short timeframe demonstrates the feasibility of our approach, which can be expanded for efficient collection of plasma AD biomarker and genetic data. [ABSTRACT FROM AUTHOR]

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 feasibility and validity. Addition of genetic data to online registries has the potential to facilitate identification of older adults at risk and to advance the understanding of genetic contributions to AD. Methods: 573 older adult participants with longitudinal online Brain Health Registry (BHR) data underwent apolipoprotein E (APOE) genotyping using remotely collected saliva samples and a novel, automated Biofluid Collection Management Portal. We evaluated acceptability of genetic sample collection and estimated associations between (1) sociodemographic variables and willingness to participate in genetics research and (2) APOE results and online cognitive and functional assessments. We also assessed acceptance of hypothetical genetics research participation by surveying a larger sample of 25,888 BHR participants. Results: 51% of invited participants enrolled in the BHR genetics study, BHR-GenePool Study (BHR-GPS); 27% of participants had at least one APOE ε4 allele. Older participants and those with higher educational attainment were more likely to participate. In the remotely administered Cogstate Brief Battery, APOE ε4/ε4 homozygotes (HM) had worse online learning scores, and greater decline in processing speed and attention, compared to ε3/ε4 heterozygotes (HT) and ε4 non-carriers (NC). Discussion: APOE genotyping of more than 500 older adults enrolled in BHR supports the feasibility and validity of a novel, remote biofluids collection approach from a large cohort of older adults, with data linkage to longitudinal online cognitive data. This approach can be expanded for efficient collection of genetic data and other information from biofluids in the future. [ABSTRACT FROM AUTHOR]

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‐Evidence for Amyloid Scanning (IDEAS) study and the online Brain Health Registry (BHR), we estimated associations between online assessments and clinical variables related to Alzheimer's disease (AD) risk. Results: Worse online learning scores and SP‐reported functional decline were associated with higher probability of AD dementia diagnosis and poor in‐clinic cognitive assessment, and with higher odds of amyloid beta (Aβ) positivity when combined with participants' report of less decline. SP report of functional decline conferred predictive value independent of online cognitive assessments. Participants underreported decline compared to SPs. Discussion: The results support the validity of online assessments and their greater utilization in healthcare and research settings. Online SP‐reported functional decline is an indicator of dementia and AD risk. [ABSTRACT FROM AUTHOR]

Background: Research registries focused on brain diseases, such as Alzheimer's disease and related dementias (ADRD), have been developed to accelerate clinical study recruitment. Completion of registry components can affect the representativeness of registry populations and data, especially where retention is critical. This study aims to provide insights for online research and retention by studying participants' perceptions of the Brain Health Registry (BHR), with a focus on those from different ethnocultural and socioeconomic backgrounds. Method: BHR is a public online registry for recruitment and longitudinal assessment focused on cognitive aging and ADRD research. Participants can provide feedback to the study team about their overall experience at any time using a questionnaire and are asked to complete feedback questionnaires after completing the Cogstate Brief Battery (CBB) (Table 1). Multivariable ordinal logistic regression estimated associations between sociodemographic characteristics (ethnocultural identity and education attainment) and feedback responses. All analyses covaried for age and gender. Result: Of all participants (N = 89,673), 5,469 (6.1%) provided feedback about their overall BHR experience and 14,676 (16.4%) provided feedback about CBB (Table 2). See Table 3 for associations between sociodemographic characteristics and feedback responses. Identifying as Latino was associated with a poorer experience with the cognitive assessment. Identifying as Latino or non‐White was associated with perceiving the cognitive assessment instructions as less clear and rating that additional help for cognitive assessment instructions would be useful. Higher educational attainment was associated with perceiving BHR site as easier to use and the instructions as clearer, as well as rating additional help for cognitive assessment instructions as less useful. Conclusion: Our findings highlight the need to improve and/or tailor online cognitive assessment design and instructions to better suit the needs of diverse ethnocultural and educational populations. More research is needed to deepen insight into improvements in cognitive assessment design to facilitate engagement and retention of diverse populations. [ABSTRACT FROM AUTHOR]

Background: Remote, internet‐based methods for recruitment, screening, and longitudinally assessing older adults have the potential to greatly facilitate Alzheimer's disease and related research, including clinical trials and observational studies. Methods: The Brain Health Registry (BHR) is an online website and registry that includes a comprehensive battery of self‐ and study partner‐report questionnaires and online neuropsychological tests. Participants are asked to return at 6‐month intervals for longitudinal follow‐up. Recently, new online infrastructure for managing remote biomarker (saliva, blood) collection and for linking in‐clinic and online data were added. Multiple current initiatives aim to increase recruitment and engagement of underrepresented populations using digital, community engaged research strategies to improve generalizability of results. These include the recent launch of a Spanish‐language website, and projects focused on increasing enrollment and task completion of Black/African American and Hispanic/Latinx individuals. Results: BHR includes >95,000 participants, >9000 of whom have enrolled study partners, 40% return for longitudinal follow up, 64% are age 55+, 80% are female, 80% identify as Non‐Latinx White, and 10% identify as Hispanic/Latinx. Participants have an average of 16.2 years of education. BHR has made >86,000 referrals to other studies, resulting in >5000 BHR participants enrolled in 25 different aging and AD observational studies and treatment trials. Over 2400 participants are co‐enrolled in BHR and collaborator studies, with online data linked to in‐clinic data. 573 participants have undergone APOE genotyping using remote saliva collection, and 629 have had blood collected using local phlebotomy for AD plasma biomarker analysis. Accumulating evidence supports the feasibility and validity of the approach, including associations with in‐clinic assessments, the ability to accurately detect MCI and enrichment for amyloid positivity. Conclusions: Major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, and cohort diversity. Lessons learned from BHR, and components of the existing infrastructure, can be used to inform future remote clinical trial design. One such future effort is ADNI4. To facilitate enrollment of new participants, ADNI4 will establish an online recruitment and screening portal, with a remote phlebotomy component, to efficiently identify those from underrepresented populations, and those likely to have preclinical and prodromal AD. [ABSTRACT FROM AUTHOR]

Background: Dyadic (self and study partner) subjective reports of an individual's recent cognitive and functional decline are an efficient approach to facilitate identification of older adults with, and at risk for, Mild Cognitive Impairment (MCI). Such methods can be easily adapted for remote administration, but few studies have investigated the ability of remotely‐collected, unsupervised dyadic subjective reports to accurately detect MCI and cognitive decline. Methods: In 289 older adults enrolled in the Brain health Registry (BHR), with clinically‐confirmed diagnoses of Cognitively‐unimpaired (CU) or MCI, we identified the optimal combination of remote measures to accurately distinguish CU from MCI. We then externally validated our predictive model in 217 participants enrolled in a separate cohort, Validation of Online Methods to Predict Cognitive Decline (eVAL). Predictors included Cogstate Brief Battery One Card Learning (OCL) accuracy; self‐ and study partner‐reported memory concern (SMCs); performance on online adaptations of Everyday Cognition Scale (ECog, self‐ and study partner‐report versions), Geriatric Depression Scale Short Form (GDS); family history of AD, age, gender, and education. We calculated 10‐fold cross validated area under the ROC curves (cvAUC), 95% confidence intervals (CI), and the percentage of participants correctly classified (accuracy) for all models. Likelihood ratio (LR) tests were used to compare model fits. Results: In the BHR cohort, models including dyad‐report ECog, family history of AD, GDS, and Cogstate OCL scores distinguished CU from MCI with the highest accuracy (cvAUC = 0.90; 95% CI = 0.83, 0.92; accuracy = 85.5%). Models excluding study partner‐report ECog distinguished diagnostic groups with moderate accuracy (cvAUC = 0.83; 95% CI = 0.78, 0.85; accuracy = 75.9%) When applied to the validation cohort, the optimal training model including dyadic report performed with moderate accuracy (Table 2). In the validation cohort, inclusion of study partner (but not self) report SMC, in addition to dyadic‐report ECog, improved model fit (LR test p<0.01). Conclusions: Remotely‐collected dyadic subjective measures, along with other remote measures, accurately distinguish CU from MCI. Subjective cognitive and functional decline and concerns about memory problems independently contribute to diagnostic discrimination. Results support future utilization of remote dyadic subjective measures to efficiently identify older adults with MCI for prodromal AD clinical trials, and in clinical care settings. [ABSTRACT FROM AUTHOR]

Background: Efficient identification of older adults with Mild Cognitive Impairment (MCI), including MCI due to AD, is a pressing challenge. Remote methods to accurately identify older adults with MCI are a promising approach. Subjective cognitive decline (SCD), reported by individuals and their study partners, can be efficiently collected remotely. Methods: In 1286 older adults in the Brain Health Registry (BHR, Table 1), using logistic regression, we determined the accuracy of online self‐report mood (Geriatric Depression Scale Short Form, GDS), family history of AD, Everyday Cognition Scale (ECog) as a measure of SCD, and Cogstate Brief Battery one card learning (OCL) accuray to distinguish (1) Cognitively‐unimpaired (CU) from MCI, and (2) CU from b‐amyloid (Ab)+ MCI. In a subset of 289 participants with enrolled study partners, we measured the contribution of study partner‐report SCD to predicting diagnostic category, and the correlation between self‐ and study partner‐report SCD. Models covaried for age, gender, and education level. Results: Self‐ and study partner‐report SCD scores were moderately correlated (r=0.44); associations between the two measures were significantly lower in participants with higher GDS scores, indicating more depressive symptoms (p=0.03). Models including self‐ and study partner‐report SCD and Cogstate OCL scores had the highest accuracy for distinguishing CU from all MCI, as well as CU from Ab+ MCI (AUC=0.90 for CU vs MCI; AUC=0.93 for CU vs Ab+ MCI). Models excluding study partner‐report SCD had moderate accuracy at diagnostic classification (AUC=0.81 for CU vs MCI; AUC=0.83 for CU vs Ab+ MCI). Models excluding all SCD measures, and instead relying on OCL accuracy scores, had lower accuracy (AUC=0.73 for CU vs MCI; AUC=0.76 for CU vs Ab+ MCI). Model outputs are summarized in Table 2. Conclusions: Remotely‐collected self‐ and study partner‐report SCD accurately distinguish CU from MCI, as well as CU from biomarker positive MCI. SCD measures perform well in identifying MCI, even in the absence of objective cognitive measures. Results support utilization of remote SCD measures to identify older adults for prodromal AD clinical trials, and who are suitable candidates to receive future anti‐amyloid therapeutics. [ABSTRACT FROM AUTHOR]

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 trials. It manages finances and develops policies for data sharing, publications using ADNI data, and access to ADNI biospecimens. The Core develops and executes pilot projects to guide future ADNI activities and identifies key innovative methods for inclusion in ADNI. For ADNI4, the Administrative Core collaborates with the Engagement, Clinical, and Biomarker Cores to develop and evaluate novel, digital methods and infrastructure for participant recruitment, screening, and assessment of participants. The goal of these efforts is to enroll 500 participants, including > 50% from underrepresented populations, 40% with mild cognitive impairment, and 80% with elevated AD biomarkers. This new approach also provides a unique opportunity to validate novel methods. HIGHLIGHTS: The Alzheimer's Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities. The overall goal is to ensure ADNI's success and help design future Alzheimer's disease (AD) clinical trials. A key innovation is data sharing without embargo to maximize scientific impact. For ADNI4, novel, digital methods for recruitment and assessment were developed. New methods are designed to improve the participation of underrepresented populations., (© 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Introduction: We evaluated preliminary feasibility of a digital, culturally-informed approach to recruit and screen participants for the Alzheimer's Disease Neuroimaging Initiative (ADNI4)., Methods: Participants were recruited using digital advertising and completed digital surveys (e.g., demographics, medical exclusion criteria, 12-item Everyday Cognition Scale [ECog-12]), Novoic Storyteller speech-based cognitive test). Completion rates and assessment performance were compared between underrepresented populations (URPs: individuals from ethnoculturally minoritized or low education backgrounds) and non-URPs., Results: Of 3099 participants who provided contact information, 654 enrolled in the cohort, and 595 completed at least one assessment. Two hundred forty-seven participants were from URPs. Of those enrolled, 465 met ADNI4 inclusion criteria and 237 evidenced possible cognitive impairment from ECog-12 or Storyteller performance. URPs had lower ECog and Storyteller completion rates. Scores varied by ethnocultural group and educational level., Discussion: Preliminary results demonstrate digital recruitment and screening assessment of an older diverse cohort, including those with possible cognitive impairment, are feasible. Improving engagement and achieving educational diversity are key challenges., Highlights: A total of 654 participants enrolled in a digital cohort to facilitate ADNI4 recruitment. Culturally-informed digital ads aided enrollment of underrepresented populations. From those enrolled, 42% were from underrepresented ethnocultural and educational groups. Digital screening tools indicate > 50% of participants likely cognitively impaired. Completion rates and assessment performance vary by ethnocultural group and education., (© 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

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., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

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., Methods: Brain Health Registry (BHR) is an online cognitive aging and ADRD-related research registry that includes longitudinal health and cognitive assessments. Using logistic regressions, we examined associations between longitudinal registry completion outcomes and self-reported (1) number of medical conditions and (2) eight defined medical condition groups (cardiovascular, metabolic, immune system, ADRD, current psychiatric, substance use/abuse, acquired, other specified conditions) in adults aged 55+ ( N = 23,888). Longitudinal registry completion outcomes were assessed by the completion of the BHR initial questionnaire (first questionnaire participants see at each visit) at least twice and completion of a cognitive assessment (Cogstate Brief Battery) at least twice. Models included ethnocultural identity, education, age, and subjective memory concern as covariates., Results: We found that the likelihood of longitudinally completing the initial questionnaire was negatively associated with reporting a diagnosis of ADRD and current psychiatric conditions but was positively associated with reporting substance use/abuse and acquired medical conditions. The likelihood of longitudinally completing the cognitive assessment task was negatively associated with number of reported medical conditions, as well as with reporting cardiovascular conditions, ADRD, and current psychiatric conditions. Previously identified associations between ethnocultural identity and longitudinal assessment completion in BHR remained after accounting for the presence of medical conditions., Discussion: This post hoc analysis provides novel, initial evidence that older adults' completion of longitudinal assessments in an online registry is associated with the number and types of participant-reported medical conditions. Our findings can inform future efforts to make online studies with longitudinal health and cognitive assessments more usable for older adults with medical conditions. The results need to be interpreted with caution due to selection biases, and the under-inclusion of minoritized communities., Competing Interests: Chengshi Jin, Anna Aaronson, Joseph Eichenbaum, Adam Diaz, Rachana Tank, Monica Camacho, Derek Flenniken, Juliet Fockler, Diana Truran‐Sacrey, and Aaron Ulbricht report no potential conflict of interest. Miriam Ashford receives support from the National Institutes of Health's (NIH) National Institute on Aging (NIA), grant F32AG072730‐01 (made to institution) and declares no potential conflicts of interest. John Neuhaus declares to have grant funding from the NIH.R. Scott Mackin declares to have grants from the following entities: NIH and Janssen Research and Development LLC, with all grant payments made to university. Michael W. Weiner receives support for his work from the following funding sources: NIH, grants from Department of Defense (DOD), grants from Patient‐Centered Outcomes Research Institute (PCORI), grants from California Department of Public Health (CDPH), grants from University of Michigan, grants from Siemens, grants from Biogen, grants from Hillblom Foundation, grants from the Alzheimer's Association, grants from the state of California, grants from Johnson & Johnson, grants from Kevin and Connie Shanahan, grants from GE, grants from VUmc, grants from Australian Catholic University (HBI‐BHR), grants from The Stroke Foundation, grants from the Veterans Administration, personal fees from Acumen Pharmaceutical, personal fees from Cerecin, personal fees from Dolby Family Ventures, personal fees from Eli Lilly, personal fees from Merck Sharp & Dohme Corp., personal fees from the NIA, personal fees from Nestle/Nestec, personal fees from PCORI/PPRN, personal fees from Roche, personal fees from University of Southern California (USC), personal fees from NervGen, personal fees from Baird Equity Capital, personal fees from BioClinica, personal fees from Cytox, personal fees from Duke University, personal fees from Eisai, personal fees from FUJIFILM‐Toyama Chemical (Japan), personal fees from Garfield Weston, personal fees from Genentech, personal fees from Guidepoint Global, personal fees from Indiana University, personal fees from Japanese Organization for Medical Device Development, Inc. (JOMDD), personal fees from Medscape, personal fees from Peerview Internal Medicine, personal fees from Roche, personal fees from T3D Therapeutics, personal fees from WebMD, personal fees from Vida Ventures, personal fees from The Buck Institute for Research on Aging, personal fees from China Association for Alzheimer's Disease (CAAD), personal fees from Japan Society for Dementia Research, personal fees from Korean Dementia Society, outside the submitted work; and I hold stocks or options with Alzheon Inc., Alzeca, and Anven. Monica Rivera Mindt declares to have grants from the following entities (NIH/NIA 2U19AG024904‐16, NIH/NIA R01AG065110‐01A1, NIH/NIA #R56AG075744, NIH/NIA R01AG066471‐01A1, NIH/NIA #U19AG078109‐01), with all grant payments made to university. Rachel L Nosheny has received support from NIA (support to institution) for the present manuscript and grants from NIA (grant to institution), California Department of Public Health (grant to institution) Genentech, Inc., Health Equity Innovations Fund (grant to institution), Alzheimer's Association (grant to institution), and Genentech Charitable Foundation (grant to institution). Author disclosures are available in the supporting information., (© 2024 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Introduction: Remote, internet-based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimer's disease (AD) clinical trials and observational studies., Methods: The Brain Health Registry (BHR) is an online registry that includes longitudinal assessments including self- and study partner-report questionnaires and neuropsychological tests. New initiatives aim to increase inclusion and engagement of commonly underincluded communities using digital, community-engaged research strategies. New features include multilingual support and biofluid collection capabilities., Results: BHR includes > 100,000 participants. BHR has made over 259,000 referrals resulting in 25,997 participants enrolled in 30 aging and AD studies. In addition, 28,278 participants are coenrolled in BHR and other studies with data linkage among studies. Data have been shared with 28 investigators. Recent efforts have facilitated the enrollment and engagement of underincluded ethnocultural communities., Discussion: The major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability., Highlights: Brain Health Registry (BHR) is an online, longitudinal platform of > 100,000 members. BHR made > 259,000 referrals, which enrolled 25,997 participants in 32 studies. New efforts increased enrollment and engagement of underincluded communities in BHR. The major advantages of the BHR approach are scalability and accessibility. BHR provides a unique adjunct for clinical neuroscience research., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

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 automatically scored, with potential to facilitate efficient dementia screening and staging., Objective: To evaluate the association of the eCDR with the CDR and other in-clinic assessments for screening older adults for cognitive impairment., Design, Setting, and Participants: This multisite, cross-sectional study used baseline data from a longitudinal, observational study from 2020 to 2023, including up to 3 years of follow-up. Participants were enrolled from 3 Alzheimer Disease Research Centers and the Brain Health Registry. Participants (aged ≥55 years, with a study partner, and no acute or unstable major medical conditions) were recruited during in-clinic visits or by automated emails., Exposures: Participants completed the Uniform Data Set Version 3 (UDS; including the CDR) in supervised clinical research settings, and then completed the eCDR remotely, online and unsupervised, using their own device., Main Outcomes and Measures: The primary outcomes were eCDR scores (item; categorical box and global; continuous box and global), CDR scores (item; categorical box and global), and UDS assessment scores. Associations were evaluated using linear and logistic regressions., Results: A total of 3565 participants were contacted, and 288 were enrolled. Among 173 participants with item-level data (mean [SD] age, 70.84 [7.65] years; 76 women [43.9%]), eCDR to CDR concordance was 90% or higher for 33 items (63%) and 70% to 89% for 13 items (25%). Box (domain) level concordance ranged from 80% (memory) to 99% (personal care). The global score concordance rate was 81%. κ statistics were fair to moderate. Among 206 participants with box and global scores (mean [SD] age, 71.34 [7.68] years; 95 women [46.1%]), eCDR continuous global score was associated with CDR global (categorical) score with an area under the receiver operating characteristic curve of 0.79 (95% CI, 0.70-0.87). Correlations between eCDR and in-clinic UDS assessments were similar to those between CDR sum of box scores and the same in-clinic assessments., Conclusions and Relevance: These findings suggest that the eCDR is valid and has potential use for screening and assessment of older adults for cognitive and functional decline related to Alzheimer disease. Instrument optimization and validation in diverse cohorts in remote settings are crucial for evaluating scalability and eCDR utility in clinical research, trials, and health care settings.