# Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy.

> **NIH NIH R01** · CINCINNATI CHILDRENS HOSP MED CTR · 2022 · $673,343

## Abstract

Abstract/summary
Leveraging the electronic health record to characterize and optimize care delivery for children 
with cerebral palsy: Cerebral palsy (CP) is the most common physical disability of childhood, but it is highly 
heterogeneous with respect to its severity, response to therapy, care needs, and impact on wellness 
for the child and family. To optimize health and wellness throughout life and enable new research 
avenues to be effectively tested, it is critical to develop a comprehensive clinical care and 
biopsychosocial data model. Development of a comprehensive model would both accelerate and improve 
understanding, care, and further research, including the identification of novel targets for 
interventions. The overriding objective of this proposal is to develop a precision health model for CP-related phenotypes, health status, care activities, and psychosocial well-being that will individualize care. To accomplish this objective, we will automate the collection, cleaning, and integration of multi-dimensional, multi-domain and multi-cohort based "big data" extracted from the electronic health record (EHR), and combine this EHR data with prospectively 
collected, high-resolution clinical, functional, environmental and psychosocial data. The focus of this proposal will be on children between ages 6 and 12 years. Preliminary work indicates that the medical center provides care for 
approximately 1,800 patients with CP who are between the ages of 6 and 12 years and have at least 
three years of EHR data. From this EHR cohort, we will prospectively recruit 200 children and their 
families for detailed phenotyping.
Recruitment will be stratified by Gross Motor Functional Classification System (GMFCS) Levels: 60% 
GMFCS I, II, or III (able to walk) and 40% GMFCS IV or V (use a wheelchair). Using this 
multi-cohort design will allow for robust characterization of multi-dimensional factors that impact care receipt, functional 
outcomes, quality of life and participation. Aim 1 will focus on creating a diverse and comprehensive data repository 
using both retrospective and prospective data to characterize actual versus optimal care (defined 
by current evidence-based literature). Aim 2 will lead to development of a receipt of care 
coefficient score and characterize how the degree of optimal care relates to function, quality of 
life and participation, controlling for functional status and age. [Models developed in Aim 2 will 
be translated into a clinical decision tool prototype. Aim 3 will demonstrate proof of concept for 
scalability of machine learning algorithms with the PEDSnet Learning Health System. This project 
innovatively combines retrospective EHR data with prospective clinical data to elucidate 
individual, treatment, family, and environmental factors associated with greater receipt of 
evidence-based care and/or better outcomes. This project will move the field toward precision 
medicine for CP and create a foundation for develo...

## Key facts

- **NIH application ID:** 10479042
- **Project number:** 5R01HD103654-02
- **Recipient organization:** CINCINNATI CHILDRENS HOSP MED CTR
- **Principal Investigator:** Bruce J Aronow
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $673,343
- **Award type:** 5
- **Project period:** 2021-09-01 → 2027-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10479042

## Citation

> US National Institutes of Health, RePORTER application 10479042, Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy. (5R01HD103654-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10479042. Licensed CC0.

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