# Behavior Measure for Children and Adolescents with Down Syndrome

> **NIH NIH R01** · CINCINNATI CHILDRENS HOSP MED CTR · 2024 · $707,077

## Abstract

PROJECT SUMMARY
There is a fundamental gap in the availability of behavioral outcome measures that are appropriate, reliable,
and valid for use with children with Down syndrome (DS). Lack of such outcome measures represents an
important problem to identifying behavioral concerns, measuring treatment effects, and interpreting clinical
trials aimed at improving the lives of individuals with DS. Without evidence-based behavioral outcome
measures, interventions and treatment trials in this population will remain suboptimal due to poor study
measures. Working groups convened by NICHD of leading experts in DS identified that no measure of
behavioral concerns was evaluated as appropriate or validated for use with individuals with DS. The overall
objective of this application is to develop and validate a novel measure of behavioral concerns, the Behavior
Inventory for Down Syndrome (BIDS), that can be used in research, clinical practice, and treatment studies
focused on children and adolescents with DS ages 2-17 years, in both English and Spanish. Our rationale for
working with this population is that DS is associated with a distinct neurobehavioral phenotype, yet key
behaviors of concern common in individuals with DS are omitted from currently available measures of
behavioral concerns. Thus, proposed items on the BIDS will incorporate behavioral concerns raised by families
and in clinical practice related to children with DS. We propose three specific aims: 1) demonstrate the
psychometric properties of the BIDS among children and adolescents with DS in English and Spanish by
identifying the BIDS measurement model, establishing reliability (test-retest and inter-rater reliability) and
validity (internal and construct validity) 2) evaluating differences in the measure’s psychometric properties as a
function of variation in selected demographic and clinical characteristics, and 3) characterize the trajectory of
the BIDS over time among children and adolescents with DS to provide comparative data for clinical trials. To
achieve these aims, we will conduct online, phone, and paper surveys in English and Spanish, and in-person
assessments in English or with Spanish-speaking interpreters, targeting children ages 2-17 years with DS. Our
research team is uniquely positioned to conduct this work, combining expertise in DS, measure
development/evaluation, Latinx populations, psychological assessment, and comorbid medical conditions. We
anticipate that this measurement study will provide critical guidance for future efficacy and effectiveness trials.
Our goals are in line with the INCLUDE Project research priority to expand inclusion of individuals with DS in
clinical trials by developing appropriate measures of behavior for this population. As our field continues to
develop new pharmaceutical and clinical interventions, our project will support this work and have an impact on
the 400,000 individuals with DS living in the United States.

## Key facts

- **NIH application ID:** 10915020
- **Project number:** 5R01HD105679-03
- **Recipient organization:** CINCINNATI CHILDRENS HOSP MED CTR
- **Principal Investigator:** Anna J. Esbensen
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $707,077
- **Award type:** 5
- **Project period:** 2022-09-15 → 2027-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10915020

## Citation

> US National Institutes of Health, RePORTER application 10915020, Behavior Measure for Children and Adolescents with Down Syndrome (5R01HD105679-03). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10915020. Licensed CC0.

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