Poster Session 04 Program Schedule
02/15/2024
12:00 pm - 01:15 pm
Room: Shubert Complex (Posters 1-60)
Poster Session 04: Neuroimaging | Neurostimulation/Neuromodulation | Teleneuropsychology/Technology
Final Abstract #5
Poster Symposium: Novel Technology-Based Approaches for Cognitive Assessment — Abstract 4
Developing A Digital Cognitive Outcome Measure for Down Syndrome-Associated AD Prevention Trials
Jason Hassenstab, Washington University in St. Louis, St. Louis, United States
Category: Teleneuropsychology/ Technology
Keyword 1: computerized neuropsychological testing
Keyword 2: dementia - Alzheimer's disease
Keyword 3: technology
Objective:
Almost all individuals with Down syndrome (DS) develop pathological indicators of Alzheimer’s disease (AD) by age 35 and are symptomatic typically in their late 40s. AD is the leading cause of death among adults with DS, yet those with DS are routinely excluded from AD prevention trials. One major limitation is that there are no cognitive outcomes for DS populations that have been designed and purpose-built for culturally and linguistically diverse groups. Because of the rarity of the DS population, and to establish meaningful cognitive change in multiple cultures for regulatory approvals, DS-AD trials will enroll participants in different languages and regions. Our approach, used to successfully develop and deploy a digital cognitive outcome in 10 languages in 22 countries in the DIAN and DIAN-TU studies, provides a global outcome measure that has undergone extensive accessibility and validity testing that can be administered remotely on participants personal smartphones in local languages.
Participants and Methods:
The Ambulatory Research in Cognition-Down Syndrome (ARC-DS) smartphone platform uses principles from ecological momentary assessment (EMA) to deliver high-frequency cognitive assessments in a measurement “burst” design. Participants receive notifications at quasi-random intervals up to four times per day for a one-week period, once per year. Notifications of test availability are delivered via text message containing a link which then presents the survey and cognitive tests via a version of a web browser. The tests and surveys rely on audio instructions and a graphically rich and intuitive interface for individuals with DS who have mild intellectual disability (ID). Use of text is minimal due to literacy constraints in this population. For convergent validity comparisons, we administer conventional cognitive measures used in other DS-AD cohort studies.
Results:
In phase one of the ARC-DS study, we have completed initial psychometric studies indicating that the measures are feasible and reliable in DS individuals with mild ID. We completed extensive user experience research (UXR) with 40 participants and their study partners (typically their parents or other family members) to identify so-called “pain points”. We found several areas to focus on for future development. We removed all reading requirements as several participants with mild ID struggled with literacy. We also recalibrated the tests in several ways to avoid ceiling and floor effects. We will present additional test data and describe our iterative task development process, including modifications made to ensure accessibility while maintaining psychometric validity. We will also describe the ARC-DS study structure, aims, and validation methods in the presentation.
Conclusions:
There is a tremendous need for validated and sensitive cognitive measures appropriate for global AD prevention trials for individuals with Down syndrome. The ARC-DS study will attempt to address these needs with a purpose-built, culturally- and linguistically- adapted digital platform compliant with security and privacy regulations that will be open-source and freely available to the DS-AD research community and industry partners.
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