# Evaluating ASD Symptomatology in Children with Down Syndrome

> **NIH NIH R21** · UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN · 2022 · $110,394

## Abstract

PROJECT ABSTRACT
 Despite continued calls for increased diversity in research samples of individuals with Down syndrome (DS)
and other neurodevelopmental disorders, researcher success in obtaining these samples is limited. Reasons for
low enrollment of diverse participants include historic scientific injustices, mistrust, lack of culturally sensitive
information and awareness about the research process, and time and resources constraints. The proposed
supplement will begin to address these barriers by engaging in activities to build community relationships and
establish trust, with the goal of obtaining a more ethnically, racially, and geographically diverse sample. First, we
will add a recruitment coordinator who is a member of one of the underrepresented communities from which we
will recruit. Then, the recruitment coordinator will (a) assemble a community advisory panel comprised of
stakeholders (e.g., parents, professionals, and self-advocates from targeted communities) to provide advice and
feedback about recruitment strategies, and b) create and distribute culturally tailored recruitment materials for
more diverse audiences (as identified by the panel). The overarching goal of the proposed supplement is to
enroll at least 150 individuals with DS from ethnically, racially, and geographically diverse backgrounds into the
parent project (total sample size = 500). The purpose of the parent project to which the proposed supplement
will contribute is to examine the reliability, validity, and variability of three well-known autism spectrum disorder
(ASD) symptom measures in a large, diverse, national sample of 6- to 18-year-olds with DS. We will leverage
data from these ASD measures, along with additional deep phenotyping, to characterize the heterogeneity of
the co-occurring ASD phenotype in DS and identify symptom profiles. Additionally, an exploratory aim among a
subsample (n = 25) at high or low ASD risk will examine the feasibility of tele-assessment methods for gathering
direct, performance-based ASD evaluations. Data generated from this project will enhance clinical trial readiness
by providing ASD measures in DS that can (a) screen for ASD risk to identify candidates for treatment, (b) stratify
cohorts by ASD symptom profiles, and (c) monitor response to treatment across these profiles. The exploratory
feasibility study will determine the extent to which tele-assessments can be used for performance-based ASD
evaluations in children with DS. The knowledge gained will prepare the field for conducting clinical trials remotely,
which will improve access to care across geographically, racially, and ethnically diverse communities. Together,
the parent project and supplement address multiple NIH INCLUDE and NICHD IDD Branch priorities, especially
(a) increase the likelihood of clinical trial success through testing of clinical outcome assessment measures, (b)
define the presentation and course of co-occurring conditions in individuals with DS, an...

## Key facts

- **NIH application ID:** 10592162
- **Project number:** 3R21HD106125-01S1
- **Recipient organization:** UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN
- **Principal Investigator:** Marie Moore Channell
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $110,394
- **Award type:** 3
- **Project period:** 2022-08-01 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10592162

## Citation

> US National Institutes of Health, RePORTER application 10592162, Evaluating ASD Symptomatology in Children with Down Syndrome (3R21HD106125-01S1). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10592162. Licensed CC0.

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