| 1. Investigation of self‐ vs. study partner SCC agreement and discordance. |
Whether levels of discordance are meaningful predictors of relevant outcomes such as biomarker status and disease progression. Dynamic relationship between self‐ and study partner report over various disease stages Identification of the disease stage (defined by objective cognitive status and clinical diagnosis) at which it is most appropriate to use dyad report, to consider discordance between self‐ and study partner report, or to rely solely on study partner report. Investigation of sources of discordance. Use of standardized measures and covariates for the assessment of anosognosia to better understand how this impacts self‐ and study partner–reported SCCs.
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| 2. Elucidation of additional factors that influence the relationship between self‐ and study partner report, and the relationship of each to outcomes of interest. |
Establishment of diverse cohorts and more concerted efforts to collect the relevant demographic, sociocultural, and relationship information in trials and observational studies. Inclusion of important variables in analyses (e.g., demographic and sociocultural factors, dyad relationship). Evidence‐based best practices for a required minimum level of “dyad familiarity” with the participant for inclusion in the study. Evaluation of study partner cognition, especially of older adult study partners.
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Consideration of limitations, accuracy, and reliability of study partner report in cases in which study partners show signs of cognitive impairment.
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| 3. Investigation of the domain specificity of dyad reports as they relate to objective measures. |
Further analysis of how participants and study partners understand the domains of SCC, including multiple cognitive domains, Instrumental Activities of Daily Living, neuropsychiatric symptoms, and memory concerns.
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| 4. Definition of best practices to use dyadic‐report data in AD clinical trials. |
Utility of study dyadic report SCC to enrich for biomarker positivity at the screening stage. Exploration of whether dyadic‐report SCC and other subjective report constructs are suitable endpoints in AD clinical trials.
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| 5. Strategies to facilitate study partner participation |
Removing logistical barriers. Increasing engagement and incentives in studies and trials. Increasing opportunities for remote participation and assessment. Greater compensation. More engagement throughout the study. Better recognition of the valuable role that study partners play in dementia research. Recruitment and consent materials that provide relevant information explaining study partner roles, responsibilities, logistical requirements, and potential emotional burdens. Emotional support, education programs, and good relationships with study team members to reduce study partner burden.
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| 6. Instrument development |
Development, validation, optimization, and use of instruments tailored to the goals of the research and to the research population in terms of demographics and disease stage.
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