# Advancing the Lives & HeaLth of Youth and Young Adults with Down Syndrome (ALLY-DS)

> **NIH NIH U01** · CHILDREN'S HOSP OF PHILADELPHIA · 2024 · $2,598,199

## Abstract

PROJECT SUMMARY
Endocrinopathies, sleep disorders, cognitive issues, cardiovascular conditions, sensory impairments, and ability
differences not only impact the quality of life of individuals with Down syndrome (DS) and their caregivers but
can intersect to magnify the threats of these co-occurring conditions. Moreover, individuals with intellectual
disabilities face additional barriers surrounding healthcare access and their decision-making involvement that
can jeopardize their health. The dearth of observational studies that richly detail co-occurring conditions, social
determinants of health (SDoH), and the ableism individuals with DS experience represents a major challenge to
providing clinical care to individuals with DS. Our long-term objective is to partner with clinicians, researchers,
individuals with DS, and caregivers across the country to establish a diverse cohort of individuals with DS for
comprehensive longitudinal phenotyping including multi-omics and to develop an infrastructure for intervention
studies. This multi-center, multi-disciplinary collaborative team will engage individuals from infancy through
young adulthood to undergo blood sample collection, imaging studies, qualitative interviews, questionnaire
completion, sleep assessments, and remote physiologic monitoring while subsets will undergo additional specific
procedures with the goal of rich longitudinal phenotyping across multiple systems:
 Endocrine: thyroid and gonadal function
 Cardiometabolic: lipids, inflammation, meal-related glucose excursion, insulin secretion & sensitivity
 Cardiovascular: blood pressure, arterial stiffness, and left ventricular mass and function
 Nutrition: anthropometrics, body composition, bone density, nutritional intake, and appetite/satiety
 Sleep: obstructive and central sleep apnea, hypoventilation, participant and caregiver sleep quantity and quality
 Physical Activity: sedentary, light, moderate, and vigorous activity
 Neurocognitive: caregiver reported and objectively assessed measures, peripheral blood Alzheimer disease
 markers, audiology, brain MRI, secondary analyses of sleep study EEG
 SDoH: family education, income, English proficiency, medical literacy, neighborhood characteristics
 Ethical Issues: decision-making involvement, experiences with ableism, and healthcare access
 Electronic Health Information: diagnoses, medications, procedures, labs, and imaging
 Multi-omics: genome, transcriptome, proteome, metabolome
Procedures will be repeated at a cadence that depends upon baseline age (<15y, every 12-18 mo) or (>15-30y,
every 24-30 mo), baseline results, pre-existing co-morbidities, and subsequent interventions. Community
members will help inform study design and the specific procedures to be undertaken will be tailored to the abilities
of individuals with DS and to minimize participant and caregiver burden.

## Key facts

- **NIH application ID:** 11001698
- **Project number:** 1U01HD116470-01
- **Recipient organization:** CHILDREN'S HOSP OF PHILADELPHIA
- **Principal Investigator:** ANDREA Bridget KELLY
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $2,598,199
- **Award type:** 1
- **Project period:** 2024-09-17 → 2029-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11001698

## Citation

> US National Institutes of Health, RePORTER application 11001698, Advancing the Lives & HeaLth of Youth and Young Adults with Down Syndrome (ALLY-DS) (1U01HD116470-01). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/11001698. Licensed CC0.

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