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IntroductionThis 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.MethodsBrain 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.ResultsWe 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.DiscussionThis 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.

INTRODUCTION: Remote, internet-based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimers 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.

IntroductionThis 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.MethodsThis 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).ResultsIn 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%).DiscussionTargeted 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.HighlightsCulturally 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.

IntroductionUse 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.MethodsWe 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.ResultsOf 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.DiscussionThis 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.

BackgroundHoarding symptoms are associated with functional impairment, though investigation of disability among individuals with hoarding disorder has largely focused on clutter-related impairment to home management activities and difficulties using space because of clutter. This analysis assesses disability among individuals with hoarding symptoms in multiple domains of everyday functioning, including cognition, mobility, self-care, interpersonal and community-level interactions, and home management. The magnitude of the association between hoarding and disability was compared to that of medical and psychiatric disorders with documented high disability burden, including major depressive disorder (MDD), diabetes, and chronic pain.MethodsData were cross-sectionally collected from 16,312 adult participants enrolled in an internet-based research registry, the Brain Health Registry. Pearson's chi-square tests and multivariable logistic regression models were used to quantify the relationship between hoarding and functional ability relative to MDD, diabetes, and chronic pain.ResultsMore than one in ten participants endorsed clinical (5.7%) or subclinical (5.7%) hoarding symptoms (CHS and SCHS, respectively). After adjusting for participant demographic characteristics and psychiatric and medical comorbidity, CHS and SCHS were associated with increased odds of impairment in all domains of functioning. Moderate to extreme impairment was endorsed more frequently by those with CHS or SCHS compared to those with self-reported MDD, diabetes, and/or chronic pain in nearly all domains (e.g., difficulty with day-to-day work or school: CHS: 18.7% vs. MDD: 11.8%, p

BackgroundHoarding disorder is a chronic psychiatric condition of increasing public health concern. Recent investigation suggests a positive association between hoarding severity and insomnia symptoms. However, these findings have yet to be replicated, and the prevalence and type of sleep impairment experienced by individuals with clinically relevant hoarding symptoms (CHSs) are not known.MethodsThis analysis of 20,473 members of the internet-based Brain Health Registry uses multivariate logistic regression modeling and structural equation modeling to evaluate the relationship between hoarding symptoms, sleep impairment, adverse health, and cognitive functioning.ResultsMore than 12% of study participants endorsed CHSs or subclinical hoarding symptoms. After adjustment for demographic characteristics and psychiatric comorbidity, individuals with CHSs reported increased odds of sleep impairment in nearly all domains. The odds of poor sleep quality (adjusted odds ratio, 2.07; 95% CI, 1.83-2.34), sleep disturbances (adjusted odds ratio, 2.15; 95% CI, 1.91-2.43), and daytime dysfunction (adjusted odds ratio, 5.84; 95% CI, 5.12-6.65) were two- to fivefold higher for individuals with CHSs compared with those without. For all measures, the proportion of individuals reporting sleep impairment increased with hoarding severity. In our structural equation model, sleep impairment acted as a partial mediator on the indirect pathways from hoarding to subjective cognitive complaints and poorer quality of life.ConclusionsIdentification of sleep problems among those with hoarding symptoms is a critical component of hoarding assessment. Additional research is needed to better understand the mechanisms underlying the observed relationships, including neurobiological underpinnings, and to examine the role of sleep management in treatment for hoarding behaviors.

Hoarding behaviors are positively associated with medical morbidity, however, current prevalence estimates and types of medical conditions associated with hoarding vary. This analysis aims to quantify the medical morbidity of hoarding disorder (HD). Cross-sectional data were collected online using the Brain Health Registry (BHR). Among 20,745 participants who completed the Hoarding and Clutter and Medical History thematic modules, 1348 had HD (6.5%), 1268 had subclinical HD (6.1%), and 18,829 did not meet hoarding criteria (87.4%). Individuals with HD were more likely to report a lifetime history of cardiovascular/metabolic conditions: diabetes (HD adjusted odds ratio (AOR):1.51, 95% confidence interval (CI):[1.20, 1.91]; subclinical HD AOR:1.24, 95% CI:[0.95, 1.61]), and hypercholesterolemia (HD AOR:1.24, 95% CI:[1.06, 1.46]; subclinical HD AOR:1.11, 95% CI:[0.94, 1.31]). Those with HD and subclinical HD were also more to report chronic pain (HD AOR: 1.69, 95% CI:[1.44, 1.98]; subclinical HD AOR: 1.44, 95% CI:[1.22, 1.69]), and sleep apnea (HD AOR: 1.58, 95% CI:[1.31, 1.89]; subclinical HD AOR:1.30, 95% CI:[1.07, 1.58]) than non-HD participants. For most conditions, likelihood of diagnosis did not differ between HD and subclinical HD. Structural equation modeling revealed that more severe hoarding symptomatology was independently associated with increased cardiovascular/metabolic vulnerability. The assessment and management of medical complications in individuals with HD is a fundamental component in improving quality of life, longevity, and overall physical health outcomes.

The Hoarding Rating Scale, Self Report (HRS-SR) is a 5-item assessment developed to ascertain the presence and severity of hoarding symptoms. This study aimed to evaluate the validity of an online adaptation of the HRS-SR in a remote, unsupervised internet sample of 23,214 members of the Brain Health Registry (BHR), an online research registry that evaluates and longitudinally monitors cognition, medical and psychiatric health status. Convergent validity was assessed among a sub-sample of 1,183 participants who completed additional, remote measures of self-reported hoarding behaviors. Structured clinical interviews conducted in-clinic and via video conferencing tools were conducted among 230 BHR participants; ROC curves were plotted to assess the diagnostic performance of the internet-based HRS-SR using best estimate hoarding disorder (HD) diagnoses as the gold standard. The area under the curve indicated near-perfect model accuracy, and was confirmed with 10-fold cross validation. Sensitivity and specificity for distinguishing clinically relevant hoarding were optimized using an HRS-SR total score cut-off of 5. Longitudinal analyses indicated stability of HRS-SR scores over time. Findings indicate that the internet-based HRS-SR is a useful and valid assessment of hoarding symptoms, though additional research using samples with more diverse hoarding behavior is needed to validate optimal cut-off values.

IntroductionThis 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.MethodsUsing Brain Health Registry (BHR) data, associations between sociodemographic variables (sex, race, ethnicity, education) and registry participation outcomes (task completion, willingness to participate in future studies, referral/enrollment in other studies) were examined in adults aged 55+ (N = 35,919) using logistic regression. All models included sex, race, ethnicity, education, age, and subjective memory concern.ResultsNon-white race, being Latino, and lower educational attainment were associated with decreased task completion and enrollment in additional studies. Results for sex were mixed.DiscussionThe findings provide novel information about engagement in online aging-related registries, and highlight a need to develop improved engagement strategies targeting underrepresented sociodemographic groups. Increasing registry diversity will allow researchers to refer more representative populations to Alzheimer's and related dementias prevention and treatment trials.

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]

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.)

Background: Hoarding disorder is a chronic psychiatric condition of increasing public health concern. Recent investigation suggests a positive association between hoarding severity and insomnia symptoms. However, these findings have yet to be replicated, and the prevalence and type of sleep impairment experienced by individuals with clinically relevant hoarding symptoms (CHSs) are not known., Methods: This analysis of 20,473 members of the internet-based Brain Health Registry uses multivariate logistic regression modeling and structural equation modeling to evaluate the relationship between hoarding symptoms, sleep impairment, adverse health, and cognitive functioning., Results: More than 12% of study participants endorsed CHSs or subclinical hoarding symptoms. After adjustment for demographic characteristics and psychiatric comorbidity, individuals with CHSs reported increased odds of sleep impairment in nearly all domains. The odds of poor sleep quality (adjusted odds ratio, 2.07; 95% CI, 1.83-2.34), sleep disturbances (adjusted odds ratio, 2.15; 95% CI, 1.91-2.43), and daytime dysfunction (adjusted odds ratio, 5.84; 95% CI, 5.12-6.65) were two- to fivefold higher for individuals with CHSs compared with those without. For all measures, the proportion of individuals reporting sleep impairment increased with hoarding severity. In our structural equation model, sleep impairment acted as a partial mediator on the indirect pathways from hoarding to subjective cognitive complaints and poorer quality of life., Conclusions: Identification of sleep problems among those with hoarding symptoms is a critical component of hoarding assessment. Additional research is needed to better understand the mechanisms underlying the observed relationships, including neurobiological underpinnings, and to examine the role of sleep management in treatment for hoarding behaviors.

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 Registry (BHR) data, associations between sociodemographic variables (sex, race, ethnicity, education) and registry participation outcomes (task completion, willingness to participate in future studies, referral/enrollment in other studies) were examined in adults aged 55+ (N = 35,919) using logistic regression. All models included sex, race, ethnicity, education, age, and subjective memory concern., Results: Non-white race, being Latino, and lower educational attainment were associated with decreased task completion and enrollment in additional studies. Results for sex were mixed., Discussion: The findings provide novel information about engagement in online aging-related registries, and highlight a need to develop improved engagement strategies targeting underrepresented sociodemographic groups. Increasing registry diversity will allow researchers to refer more representative populations to Alzheimer's and related dementias prevention and treatment trials., (© 2020 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.)