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Leveraging a global, federated, real-world data network to optimize investigator-initiated pediatric clinical trials: the TriNetX Pediatric Collaboratory Network

  • Jurran L. Wilson
  • , Marisol Betensky
  • , Sharda Udassi
  • , Pavithra R. Ellison
  • , Richard Lilienthal
  • , Lindsay R. Stahl
  • , Matvey B. Palchuk
  • , Ayesha Zia
  • , Deborah A. Town
  • , Wes Kimble
  • , Neil A. Goldenberg
  • , Hiroki Morizono

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: Clinical research networks facilitate collaborative research, but data sharing remains a common barrier. Materials and Methods: The TriNetX platform provides real-time access to electronic health record (EHR)-derived, anonymized data from 173 healthcare organizations (HCOs) and tools for queries and analysis. In 2022, 4 pediatric HCOs worked with TriNetX leadership to found the Pediatric Collaboratory Network (PCN), facilitated via a multi-institutional data-use agreement (DUA). The DUA enables collaborative study design and execution, with institutional review board-approved transfer of complete datasets for further analyses on a per-protocol basis. Results and Discussion: Of the 41.2 million children with TriNetX records, the PCN represents nearly 10%. The PCN assisted several early-career investigators to bring study concepts from conception to an international scientific meeting presentation and journal submission. Conclusion: The PCN facilitates EHR vendor-agnostic multicenter pediatric research on the global TriNetX platform. Continued growth of the PCN will advance knowledge in pediatric health.

Original languageEnglish (US)
Article numberooae077
JournalJAMIA Open
Volume7
Issue number3
DOIs
StatePublished - Oct 1 2024

Keywords

  • electronic health record
  • pediatric
  • real-world data

ASJC Scopus subject areas

  • Health Informatics

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