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
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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.
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