BackgroundRemote, 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.MethodsThe 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.ResultsBHR 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.ConclusionsMajor 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.

Efficient identification of cognitive decline and Alzheimer's disease (AD) risk in early stages of the AD disease continuum is a critical unmet need. Subjective cognitive decline is increasingly recognized as an early symptomatic stage of AD. Dyadic cognitive report, including subjective cognitive complaints (SCC) from a participant and an informant/study partner who knows the participant well, represents an accurate, reliable, and efficient source of data for assessing risk. However, the separate and combined contributions of self‐ and study partner report, and the dynamic relationship between the two, remains unclear. The Subjective Cognitive Decline Professional Interest Area within the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment convened a working group focused on dyadic patterns of subjective report. Group members identified aspects of dyadic‐report information important to the AD research field, gaps in knowledge, and recommendations. By reviewing existing data on this topic, we found evidence that dyadic measures are associated with objective measures of cognition and provide unique information in preclinical and prodromal AD about disease stage and progression and AD biomarker status. External factors including dyad (participant–study partner pair) relationship and sociocultural factors contribute to these associations. We recommend greater dyad report use in research settings to identify AD risk. Priority areas for future research include (1) elucidation of the contributions of demographic and sociocultural factors, dyad type, and dyad relationship to dyad report; (2) exploration of agreement and discordance between self‐ and study partner report across the AD syndromic and disease continuum; (3) identification of domains (e.g., memory, executive function, neuropsychiatric) that predict AD risk outcomes and differentiate cognitive impairment due to AD from other impairment; (4) development of best practices for study partner engagement; (5) exploration of study partner report as AD clinical trial endpoints; (6) continued development, validation, and optimization, of study partner report instruments tailored to the goals of the research and population.

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.