# Sharing Developmental, Meta, and Video Data from Preterm Infants Enrolled in the SPEEDI Clinical Trial

> **NIH NIH R03** · UNIVERSITY OF SOUTHERN CALIFORNIA · 2023 · $175,481

## Abstract

Rigorously collected longitudinal developmental data from very preterm infants will propel the fields of child
development and childhood rehabilitation forward in 3 ways: 1) Combining data sets to increase rigor of
predictive models and determine individual and cumulative risk for developmental delay or Cerebral Palsy
(CP), 2) Analysis of clinical trial outcomes using consistent outcome measures could replace the need for
some comparative effectiveness studies, 3) Intervention data from multiple studies will provide data for
preliminary modeling of personalized medicine rehabilitation interventions. However, to achieve any of these
goals, sharing of longitudinal developmental data from cohort studies and clinical trials is crucial.1,2
 The purpose of this proposal for Funding Opportunity Announcement (FOA) Number
PAR-22-261 Archiving and Documenting Child Health and Human Development Data Sets is to ensure
that data from this three arm multi-site clinical trial of 85 very preterm infants, funded by NICHD prior to NIH’s
guidelines for data sharing, is made available to research teams who could use it to address research
questions beyond the initial study aims.3 Now is the time to fund the transition of this exciting data from a
private dataset into a shared data set allowing the wealth of secondary analysis or harmonization with data set
from other clinical trials which likely already include sharing plans. For example NICU trials including sensory
intervention4, parenting5, and combined6 trials could be compared with the parent project. In addition, research
teams focusing on understanding development are excited to use this data set and videos to answer questions
on topics ranging from language acquisition to fine motor development.
 Infants born preterm are at high risk of developmental delays with up to 20 percent of infants born very
preterm diagnosed with cerebral palsy (CP) at 2 years of age. While the development of the Common Data
Elements for CP (CDE_CP)7 have increased the rigor of individual studies, the use of these highly
recommended outcomes also increases the likelihood of combining data sets. The parent project (R01
HD093624, NCT03518736) uses a combination of outcome measures from the CDE_CP which will enable
harmonization with other data sets. In addition, the use of innovative outcomes that can be used to evaluate
early problem-solving in infants and parent infant relationships starting in the NICU will allow for new and
innovative developmental questions. Thus, researchers from a broad number of fields will benefit from sharing
this data. The aims included in this proposal focus on what can be done with this data set alone.
Aim 1) Provide an accessible dataset with longitudinal data on developmental measures including the
recommended common data elements for CP (CDE_CP) and additional measures that are sensitive to
change in children without CP. Since the 2017 publication of the International Guidelines for the Early and
Accur...

## Key facts

- **NIH application ID:** 10789838
- **Project number:** 1R03HD113705-01
- **Recipient organization:** UNIVERSITY OF SOUTHERN CALIFORNIA
- **Principal Investigator:** Stacey Chapman Dusing
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2023
- **Award amount:** $175,481
- **Award type:** 1
- **Project period:** 2023-09-20 → 2025-09-15

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10789838

## Citation

> US National Institutes of Health, RePORTER application 10789838, Sharing Developmental, Meta, and Video Data from Preterm Infants Enrolled in the SPEEDI Clinical Trial (1R03HD113705-01). Retrieved via AI Analytics 2026-06-23 from https://api.ai-analytics.org/grant/nih/10789838. Licensed CC0.

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