Project Title

Building Modular Pediatric Chronic Disease Registries for QI and CE Research

Publication Date


Author Information

John Hutton, M.D.
Division of Biomedical Informatics
Cincinnati Children’s Hospital Medical Center


The overall goal of this project is to support a learning health system by building an open-access data sharing network focusing on a pediatric population to improve care and increase patient participation. The modular, versatile, and scalable registry will be populated by electronic health records (EHRs) and used to support quality improvement (QI) and comparative effectiveness research (CER). For more information, visit

Geographic scope type


Locations of Focus

Sites are located throughout the United States and there is one ImproveCareNow site in London, England.

Population Network Size

4,769 enrolled patients

Informatics Platform/Tools

i2b2, SHRINE, Oracle, Microsoft SQL Server, SAS

Grant Type

Enhanced Registries

Major Partners

Cincinnati Children’s Hospital Medical Center (lead site); Epic Corporation; ImproveCareNow Network; Collaborative Chronic Care Network (C3N)

CER/PCOR Study Priority Populations

Low-income groups, Children, Individuals who need chronic care, Individuals who live in inner-city areas, Individuals who live in rural areas

Treatment Comparators

Timing of biologic agents (anti-TNFα); Councils: families/patients, AHCs, new subspecialty groups