Improving generalizability and study design of Alzheimer's disease cohort studies in the United States by including under‐represented populations

Mindt, Monica Rivera; Okonkwo, Ozioma C.; Weiner, Michael W.; Veitch, Dallas P.; Aisen, Paul S.; Ashford, Miriam T.; Coker, Godfrey; Donohue, Michael C.; Langa, Kenneth M.; Miller, Garrett; Petersen, Ronald C.; Raman, Rema; Nosheny, Rachel L.

doi:10.1002/alz.12823

Cited by 24 publications

(11 citation statements)

References 53 publications

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“…As with ADNI, which makes all data available to requestors, the BHR has freely shared data with interested investigators. Our data sharing has led to a number of publications 15–44 . The BHR data are extremely large and complex, especially due to various changes that are made to add or remove various features.…”

Section: Discussionmentioning

confidence: 99%

“…A number of local and national US AD‐related registries including the Alzheimer's Prevention Registry 7 and the Alzheimer Prevention Trial (APT) webstudy 8,9 exist, and differ in format and purpose 10–14 . Launched in 2014, the Brain Health Registry (BHR) is an online platform for the recruitment and assessment of participants for aging research 15–45 . By amassing a large pool of prequalified participants, the BHR aims to make clinical trials and neuroscience research studies more efficient and innovative.…”

Section: Introductionmentioning

confidence: 99%

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Brain health registry updates: An online longitudinal neuroscience platform

Weiner

Aaronson

Eichenbaum

et al. 2023

Alzheimer's & Dementia

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IntroductionRemote, 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.MethodsThe 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.ResultsBHR 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.DiscussionThe 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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Brain health registry updates: An online longitudinal neuroscience platform

Weiner

Aaronson

Eichenbaum

et al. 2023

Alzheimer's & Dementia

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“…There are numerous, complex factors contributing to the lack of inclusion of these groups in research, including failure of researchers to gain trust in these communities due to a legacy of unethical treatment, higher rates of comorbidities among these groups, failure of investigators to share information about studies with these groups, time burden of participation, issues with study design, and structural factors. 34,35 Frameworks such as community-engaged research have shown promise for increasing inclusion and engagement of minoritized communities, such as Black and Latino individuals, in ADRD research. [35][36][37] Several initiatives are now underway in BHR to improve participation of minoritized groups.…”

Section: Discussionmentioning

confidence: 99%

Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

Aaronson,

Ashford,

Jin

et al. 2023

Alzheimer's & Dementia

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BACKGROUNDIn 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.METHODSDemographics 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.RESULTSA 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.DISCUSSIONThe 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.

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“…11 Assumptions based on research in which the majority of individuals are White may not provide appropriate insight into racial and ethnic minority populations in the US. 12,13 In the search for terminology to aid communication with all individuals living with dementia and their families and for broad communication with the public, careful testing with attention to race and ethnicity and culture is necessary. 8 A more comprehensive data collection is planned for the next phase of this work, including more robust qualitative data, to ensure that input is obtained from multiple types of patients and caregivers.…”

Section: Racial and Ethnic Diversity And Inclusion: Focus Groupsmentioning

confidence: 99%

“…The qualitative data support prior research indicating that term preferences and usage differ across racial and ethnic groups . Assumptions based on research in which the majority of individuals are White may not provide appropriate insight into racial and ethnic minority populations in the US . In the search for terminology to aid communication with all individuals living with dementia and their families and for broad communication with the public, careful testing with attention to race and ethnicity and culture is necessary .…”

Section: Nature Of the Problemmentioning

confidence: 99%

A New Framework for Dementia Nomenclature

Petersen,

Weintraub,

Sabbagh

et al. 2023

JAMA Neurol

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ImportanceNomenclature in the field of neurodegenerative diseases presents a challenging problem. Inconsistent use of terms such as Alzheimer disease and dementia has compromised progress in clinical care, research, and development of therapeutics. Dementia-associated stigma further contributes to inconsistent and imprecise language. The result is a lack of clarity that produces confusion with patients and the general public and presents communication challenges among researchers. Therefore, the Advisory Council on Research, Care, and Services of the National Plan to Address Alzheimer’s Disease authorized a committee to make recommendations for improvement.ObjectiveTo establish a systematic neurodegenerative disease framework for information collection and communication to standardize language usage for research, clinical, and public health purposes.Evidence ReviewThe Dementia Nomenclature Initiative organized into 3 major stakeholder working groups: clinicians, researchers, and the public (including individuals living with dementia and family caregivers). To inform the work, the initiative completed a narrative literature review of dementia nomenclature evolution over the last century across the PubMed, CINAHL, PsycInfo, and Scopus databases (January 1, 2000, through July 31, 2020). Initiative working groups used the results as a foundation for understanding current challenges with dementia nomenclature and implications for research, clinical practice, and public understanding. The initiative obtained additional input via focus groups with individuals living with dementia and caregivers, with separate groups for race and ethnicity (American Indian or Alaska Native, Asian or Pacific Islander, Black or African American, Hispanic or Latino, and White) as an initial assessment of the meaning of dementia-related terms to these groups.FindingsFrom working group deliberations, the literature review, and focus group input, the initiative developed a framework clearly separating the clinical syndromic presentation experienced by affected individuals from possible underlying pathophysiologies. In the framework, domains of clinical impairment, such as cognitive, behavioral, motor, and other neurologic features, are graded by level of impairment between none and severe. Next, biomarker information describes underlying disease processes, explains the syndrome, and identifies possible disease labels: Alzheimer disease, frontotemporal degeneration, dementia with Lewy bodies, or vascular cognitive impairment dementia.Conclusions and RelevanceThe Dementia Nomenclature Initiative established a framework to guide communication about cognitive impairment among older adults. Wider testing and refinement of the framework will subsequently improve the information used in communicating about cognitive impairment and the way in which the information is used in clinical, research, and public settings.

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Improving generalizability and study design of Alzheimer's disease cohort studies in the United States by including under‐represented populations

Cited by 24 publications

References 53 publications

Brain health registry updates: An online longitudinal neuroscience platform

Brain health registry updates: An online longitudinal neuroscience platform

Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

A New Framework for Dementia Nomenclature

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