Creation of a Multicenter Pediatric Inpatient Data Repository Derived from Electronic Health Records

Christoph P. Hornik, Andrew M. Atz, Catherine Bendel, Francis Chan, Kevin Downes, Robert Grundmeier, Ben Fogel, Debbie Gipson, Matthew Laughon, Michael Miller, Michael Smith, Chad Livingston, Cindy Kluchar, Anne Heath, Chanda Jarrett, Brian McKerlie, Hetalkumar Patel, Christina Hunter

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


BACKGROUND: Integration of electronic health records (EHRs) data across sites and access to that data remain limited.

OBJECTIVE: We developed an EHR-based pediatric inpatient repository using nine U.S. centers from the National Institute of Child Health and Human Development Pediatric Trials Network.

METHODS: A data model encompassing 147 mandatory and 99 optional elements was developed to provide an EHR data extract of all inpatient encounters from patients <17 years of age discharged between January 6, 2013 and June 30, 2017. Sites received instructions on extractions, transformation, testing, and transmission to the coordinating center.

RESULTS: We generated 177 staging reports to process all nine sites' 147 mandatory and 99 optional data elements to the repository. Based on 520 prespecified criteria, all sites achieved 0% errors and <2% warnings. The repository includes 386,159 inpatient encounters from 264,709 children to support study design and conduct of future trials in children.

CONCLUSION: Our EHR-based data repository of pediatric inpatient encounters utilized a customized data model heavily influenced by the PCORnet format, site-based data mapping, a comprehensive set of data testing rules, and an iterative process of data submission. The common data model, site-based extraction, and technical expertise were key to our success. Data from this repository will be used in support of Pediatric Trials Network studies and the labeling of drugs and devices for children.

Original languageEnglish (US)
Pages (from-to)307-315
Number of pages9
JournalApplied clinical informatics
Issue number2
StatePublished - Mar 2019

Bibliographical note

Funding Information:
This work was funded under National Institute for Child Health and Human Development (NICHD) contract HHSN27520100–003I for the Pediatric Trials Network (PI: Danny Benjamin). C.P.H. receives support for research from NICHD grant K23HD090239. M.L. receives funding from FDA grant RO1 5R01FD005101–03.

Funding Information:
K.D. has received research support from Merck, Inc. and Pfizer, Inc. M.L. has received research support from United Therapeutics. The remaining authors have nothing to disclose.

Publisher Copyright:
© 2019 Georg Thieme. All rights reserved.


  • NICHD Pediatric Trials Network
  • data extraction
  • electronic heath record reuse
  • inpatient repository
  • pediatric clinical trials


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