How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults

Langbaum, Jessica B.; Maloney, Erin K.; Hennessy, Michael; Harkins, Kristin; Karlawish, Jason; Nosheny, Rachel L.; Bleakley, Amy

doi:10.1002/alz.13126

Cited by 6 publications

(2 citation statements)

References 35 publications

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“…It is not currently clear what participants want from their registry experience and whether a single interaction might get the participant what they want, for example, being registered to be informed about other research opportunities. Future research could survey participants about what they want from a registry experience 41 …”

Section: Discussionmentioning

confidence: 99%

Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions

Ashford,

Jin,

Neuhaus

et al. 2024

A&D Transl Res & Clin Interv

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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.

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Section: Discussionmentioning

confidence: 99%

Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions

Ashford,

Jin,

Neuhaus

et al. 2024

A&D Transl Res & Clin Interv

Self Cite

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“… 42 Men, on average, also have a lower intention to join an ADRD research registry. 43 These findings raise questions about the sociocultural and psychological factors that may be supporting these outcomes.…”

Section: Sex/gender Identity Affects a Person's Social And Psychologi...mentioning

confidence: 99%

Sex, gender, sexual orientation, and more: Sexual diversity in Alzheimer's research needs a new lens to achieve inclusive research and generalizable results

Stites,

Velocci

2024

A&D Transl Res & Clin Interv

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Diversity, Equity, and Inclusion (DEI) efforts in Alzheimer's disease and related dementia (ADRD) research are guiding the adoption of two‐step self‐report questions that capture research participants’ identity based on categories of sex, sexual orientation, and gender identity. The intent is to facilitate inclusion and representation of sexual and gender minoritized (SGM) communities in ADRD research. The data from using these questions are on a collision course with another National Institute of Aging initiative, which is aimed at understanding sex differences in ADRD mechanisms. Here, we critically analyze the goals and methods of the two initiatives. We propose that, in addition to being SGM focused, DEI efforts are needed to expand how scientists consider and measure sexual diversity itself.Highlights Sex, sexual orientation, and gender identity (SSOGI) will be asked in ADRD studies. SSOGI data will expand representation of research participant identities. SSOGI data are on a collision course with sex differences research. Both emphasize sexual diversity (SD) largely as SSOGI identity categories. Diversity, Equity, and Inclusion efforts must develop SD methods in ADRD research.

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The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials

Nosheny,

Miller,

Conti

et al. 2024

Alzheimer's & Dementia

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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.

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How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults

Cited by 6 publications

References 35 publications

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

Sex, gender, sexual orientation, and more: Sexual diversity in Alzheimer's research needs a new lens to achieve inclusive research and generalizable results

The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials

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