# Remote assessments for Alzheimer’s disease cognitive decline in adults with Down syndrome

> **NIH NIH K99** · UNIVERSITY OF WISCONSIN-MADISON · 2024 · $106,380

## Abstract

PROJECT SUMMARY/ABSTRACT
The 75-90% lifetime risk of Alzheimer’s disease (AD) in Down syndrome (DS) is a significant health concern for
the DS community. Despite the progress of large international consortiums preparing the field for upcoming
clinical trials, there are currently no validated remote assessment options for tracking AD-related cognitive
decline for adults with DS. Remote assessment offers numerous benefits to participants and researchers and
will support recruitment and retention in AD clinical trials, which involve many study visits to assess cognitive
and behavioral changes throughout a pharmaceutical or behavioral intervention. Additionally, remote
assessment will enhance the accuracy of longitudinal research studies by allowing more frequent data
collection without significantly increasing participant burden. Using remote assessments will open participation
to those in rural communities, those with low economic statuses, and racial/ethnic groups who may not have
the time or resources for the travel and cost that in-person participation requires. This study will focus on the
life stage when AD pathology is beginning (22 – 55 years old) to ensure that those in beginning stages of
disease progression are included in the study sample. All cognitive measures selected to transition from in-
person to remote administration have been shown to be promising for tracking early AD. The K99 phase of the
study will focus on the feasibility and modification of remote administration to ensure families are satisfied with
remote assessment procedures. The R00 phase will focus on evaluating the reliability and validity of remote
measures by comparing performance to in-person assessments, investigating test-retest performance, and
measuring change over 16 months. The R00 phase will also include a blood draw to examine associations
between cognitive measures and plasma AD biomarkers. Methodology is innovative in that it involves a new
frontier of remote assessment tools and incorporates plasma biomarkers of AD to compare remote and in-
person cognitive performance to AD pathology. There are three primary aims of the proposed study (1)
Develop and test the feasibility and acceptability of remote assessments to measure AD-related cognitive
decline in adults with DS, (2) Evaluate the reliability of each remote AD cognitive assessment and construct
validity with in-person cognitive assessments, and (3) Determine sensitivity of remote and in-person AD
cognitive assessments to plasma biomarkers of AD pathology. This project’s goals are aligned with the NIH
INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE)
initiative and will serve to increase measurement options for treatment studies in AD and DS and subsequently
improve reach and representation of diverse individuals in clinical trials and DS research.

## Key facts

- **NIH application ID:** 10781514
- **Project number:** 1K99AG084738-01
- **Recipient organization:** UNIVERSITY OF WISCONSIN-MADISON
- **Principal Investigator:** Emily Katherine Schworer
- **Activity code:** K99 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $106,380
- **Award type:** 1
- **Project period:** 2024-06-01 → 2026-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10781514

## Citation

> US National Institutes of Health, RePORTER application 10781514, Remote assessments for Alzheimer’s disease cognitive decline in adults with Down syndrome (1K99AG084738-01). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10781514. Licensed CC0.

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