1. Leveraging a global, federated, real-world data network to optimize investigator-initiated pediatric clinical trials: the TriNetX Pediatric Collaboratory Network.
- Author
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Wilson JL, Betensky M, Udassi S, Ellison PR, Lilienthal R, Stahl LR, Palchuk MB, Zia A, Town DA, Kimble W, Goldenberg NA, and Morizono H
- 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., Competing Interests: A.Z. has received honoraria from Sanofi and Takeda for her role as an advisory board member for scientific advisory boards in the past 3 years. N.A.G. has received or has recently received consultancy fees from Anthos Therapeutics, Bayer, Boehringer-Ingelheim, Daiichi Sankyo, and the University of Colorado-affiliated Academic Research Organization CPC Clinical Research for roles in clinical trial planning or oversight committees (eg, advisory committee; steering committee; data and safety monitoring committee) in pharmaceutical industry-sponsored pediatric clinical trials of antithrombotics. All other authors have indicated they have no financial relationships or potential conflicts of interest relevant to this article to disclose., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)
- Published
- 2024
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