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Landscape of Early Neuropsychological Changes in AD/ADRD Webinar Series

Landscape Webinar Series Overview

Early intervention may help prevent Alzheimer’s disease and Alzheimer’s disease-related dementia (AD/ADRD), but there are significant limitations with early prediction of cognitive and functional decline using standard research and clinical tools. The Landscape of Early Neuropsychological Changes in AD/ADRD Project, led by NIA, convened 35 experts from September 2022 to April 2023 for a series of webinars to discuss gaps in measuring early changes in AD/ADRD. These webinars identified constructs and measures that characterize early changes in AD/ADRD beyond cognition alone and discussed how to advance research to develop promising measures into usable endpoints for AD/ADRD prevention trials.

Dr. Luke Stoeckel, program director, project scientist, NIA, NIH, presented four questions to guide discussion during each webinar session:

  1. What are gaps, barriers, opportunities, and research priorities for measurement development for the detection of early (i.e., before clinical diagnosis) neuropsychological (including non-cognitive) and functional changes related to AD/ADRD that, if addressed, will advance research to inform the design and conduct of prevention trials?
  2. What are the measurement (e.g., measures, methods) and infrastructure needs? What existing projects, networks, and infrastructure can be leveraged to advance this work?
  3. How can this work contribute to research efforts that promote brain health equity and prioritize Diversity, Equity, Inclusion, and Accessibility (DEIA) and open science principles and practices?
  4. What are promising approaches that haven’t worked or have underperformed and why?

Watch the recordings below for each webinar.

Introduction Webinar: Setting the Stage

Introduction Webinar Highlights:

  • Bilder emphasized several future directions for the field of neuropsychological measures:

    • Build on existing measurement platforms and data infrastructures, as well as efforts to identify opportunities for large-scale data acquisition and aggregation.

    • Expand focus on common data elements across disorders.

    • Leverage data from electronic health records and expand research projects that aim to harmonize data types.

    • Forge new relationships to promote shared standards for digital, mobile, and electronic health initiatives.

  • Germine posed questions to guide considerations related to openness, accessibility, inclusivity, and integrability of neuropsychological measurements:

    • Is this method implemented in a way that is open and will enable transparency and facilitate dissemination of methods, algorithms, and results?

    • Does this method permit integration across studies, levels, and modalities?

    • What individuals and communities have access to this method?

    • What communities have access limitations to this method because of cost, expertise, infrastructure, or generalizability?

    • What steps are being taken to ensure that development or application of this method includes those impacted by AD/ADRD and would most benefit from advances in diagnosis and treatment?

Webinar 1 (Nov. 29, 2022): Assessment of Neuropsychological Change Across the Lifespan

Webinar 1 Highlights:

During this webinar, speakers presented on their work related to cognitive assessments, including the Memory for Semantically Related Objects (MESERO) and Face-Name Associative Memory Exam (FNAME), and research programs focused on detection (e.g., Multicultural Alzheimer’s Prevention Program (MAPP) Remote, Cognitive Neuroscience Task Reliability and Clinical Applications (CNTRACs)).

This webinar resulted in four action items for the AD/ADRD and neuropsychological assessment fields (shown below):

  • Invest in culturally, linguistically, and sociodemographically diverse longitudinal samples that begin earlier in the lifespan, capture comorbidities, and integrate neurobiological and behavioral markers (e.g., AD biomarkers, social determinants of health (SDOH), mobile sensors, emotional, behavioral, and clinical outcomes, genetics).

  • Identify strategies to harmonize cognitive measures across studies (e.g., by applying qualitative/global measures and innovative psychometric approaches).

  • Expand native measurement beyond “cold cognitive” functioning to capture social cognition, emotional processing, reward/motivation, effort mobilization, and decision-making.

  • Validate innovative approaches to track intraindividual change across a range of timescales.

Webinar 2 (Dec. 13, 2022): Subjective Cognitive Change (SCC)

Webinar 2 Highlights:

This webinar focused on SCC and Subjective Cognitive Decline (SCD) and how to correlate those constructs with AD risk. Germine outlined several action items resulting from this webinar (shown below):

  • Compare measures of SCC/SCD (e.g., every day, dyadic, brief) for association with biomarkers, objective performance, and AD progression.

  • Identify factors that influence SCC/SCD measurement across communities.

  • Develop best practices for participant engagement.

Webinar 3 (Jan. 17, 2023): Digital Phenotyping and Measures

Webinar 3 Highlights:

During this webinar, speakers and discussants focused on the current and future potential for digital technologies in the assessment of early cognitive changes in AD/ADRD. Bilder presented key action items that resulted from this webinar (shown below):

  • Conduct community-partnered participatory research, including user interface and user experience projects.

  • Adopt privacy and safety standards, as well as clear data-use agreements.

  • Develop standards for validation, including outcome definitions and probabilistic thresholds.

Webinar 4 (March 28, 2023): Neuropsychiatric Symptoms, Behaviors, and Socioemotional Function

Webinar 4 Highlights:

This webinar focused on the assessment of Neuropsychiatric Symptoms (NPS), behaviors, and socioemotional function in relation to AD/ADRD. Geddes presented three action items that resulted from this webinar (shown below):

  • Apply a multidisciplinary approach combining psychometric expertise, computational methods, and repeated measurement of affect/behavior in longitudinal preclinical cohorts.

  • Develop new methods and digital measures for automation, remote assessment, innovation in data processing, and comparability over time.

  • Plan a workshop focused on objective physiologic and behavioral biomarkers of NPS.

Webinar 5 (March 28, 2023): Clinical and Real-World Measures

Webinar 5 Highlights:

This webinar focused on ecologically valid, real-world measures to assess behavior and detect cognitive change, as well as other indicators of AD/ADRD pathology. Bilder presented three key action items that resulted from this webinar (shown below):

  • Compare different novel measures related to AD onset and biomarkers.

  • Create new architecture for health data aggregation.

  • Develop regulations, guidelines, and shared policies.

Webinar 6 (May 3, 2023): General Discussion

Webinar 6 Highlights:

This webinar involved participants engaging in moderated discussions. Examples of the themes of discussion are highlighted below:

  • Harmonization: The AD/ADRD field needs to identify strategies to harmonize datasets in order to conduct well-powered mechanisms research.

  • Diversity and Engagement: Assessing cognitive measures in representative patient populations over time is critical to improving the well-being of everyone affected by a condition.

  • Engaging with More Unique Perspectives: To optimize an assessment or study’s usefulness to research and clinical settings, researchers must engage with people from many unique perspectives, including patients, family members, caregivers, providers, and communities.

  • Clear Objectives for Digital and Real-World Measures: Participants emphasized the importance of having clear research objectives for the development of digital and real-world measures.

  • Digital Data Repository: Participants agreed that a major current priority is the need to generate big digital datasets on mobility, voice, and other behavioral parameters and store them in an accessible repository.

  • Cognition and Behavior: Researchers in the field of neuropsychology should conduct studies to develop and assess behavior-focused tools. In addition, standardizing the definition of cognition and behavior, as well as specific behaviors, may help to drive studies in these areas.

Future Research Priorities:

  • How do we assess neuropsychological changes across the lifespan?

  • How do we capture SCCs and neuropsychiatric symptoms that are linked with AD/ADRD pathological processes?

  • How do we integrate clinical and real-world measures to detect early signs of functional changes?

  • How do we integrate digital tools, including more precise, real-time, longitudinal, and temporally dense measurement, into AD/ADRD prevention trials?

  • Which factors, including social and structural factors beyond race, ethnicity, and education, have critical roles as mediators of cognitive decline and midlife AD/ADRD risk?

For more information about the webinar series, see the full webinar summary report (PDF, 669K).

Related Announcements and Activities:

  • Notice of Intent to Publish a Funding Opportunity Announcement for Open Measurement Coordinating Network for Non-Pharmacological Alzheimer's Disease (AD) and AD-Related Dementias (ADRD) Primary Prevention Trials (U24 Clinical Trial Not Allowed)

    • How Much? 8M in FY25 to fund 1 award.

    • When are applications due? June 2024

    • The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), intends to publish a Notice of Funding Opportunity (NOFO) to solicit applications that propose to establish a national Open Measurement Coordinating Network for Non-Pharmacological Alzheimer's Disease (AD) and AD-related Dementias (ADRD) Primary Prevention Trials. The Network will serve as a centralized hub for developing, validating, standardizing, and disseminating measures and measurement methods for AD/ADRD primary prevention trials. It will incorporate measures and measurement methods across neuropsychological, biomarker, and functional domains to meet the goal of primary prevention of AD/ADRD centered around brain health equity. Brain health equity is the fair distribution of brain health determinants, outcomes, and resources within and between segments of the population, regardless of social standing. Measures and methods of interest will test outcomes and mechanisms of action in settings customized for individuals with different needs and linked to real-world function.

  • Upcoming American College of Neuropsychopharmacology (ACNP) Session - December 4th, 2023, 9-11 am EST: The Landscape of Early Neurocognitive Changes: Implications for Clinical Trials and Real World Applications [Study group: Yakeel Quiroz (moderator), Ganesh Babulal, Ipsit Vahia, Laura Germine, Maiya Geddes, Zahinoor Ismail, Bob Bilder (scientific chair), and Luke Stoeckel (NIH)], has been accepted for presentation at the ACNP 62nd Annual Meeting. This year’s meeting will be in Tampa, Florida, December 3-6, 2023. See the full schedule and registration information.

  • Alzheimer's Association International Conference (AAIC) Session - July 17th, 2023: The Interface of Cognition and Behavior for Dementia Risk
    • Session Presenter: Maiya R. Geddes - Using Remote Assessments for Dementia Prognostication

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