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

Author:

Wilson Jurran L1ORCID,Betensky Marisol23,Udassi Sharda4,Ellison Pavithra R5,Lilienthal Richard6,Stahl Lindsay R6,Palchuk Matvey B6ORCID,Zia Ayesha7,Town Deborah A8,Kimble Wes9,Goldenberg Neil A310,Morizono Hiroki11ORCID

Affiliation:

1. Center for Translational Research, Children’s National Hospital , Washington, DC 20010, United States

2. Department of Pediatrics, Division of Hematology, Johns Hopkins University School of Medicine , Baltimore, MD 21287, United States

3. Johns Hopkins All Children’s Institute for Clinical and Translational Research, St Peterburg , FL 33701, United States

4. Department of Pediatrics, WVU Medicine Children’s Hospital , Morgantown, WV 26505, United States

5. Department of Anesthesiology, WVU Medicine Children’s Hospital , Morgantown, WV 26505, United States

6. TriNetX, LLC , Cambridge, MA 02140, United States

7. Department of Pediatrics, UT Southwestern Medical Center , Dallas, TX 75390, United States

8. Research, Children’s HealthSM , Dallas, TX 75235, United States

9. West Virginia Clinical and Translational Science Institute , Morgantown, WV 26506, United States

10. Departments of Pediatrics and Medicine, Johns Hopkins University School of Medicine , Baltimore, MD 21287, United States

11. Center for Genetic Medicine Research, Children’s National Hospital , Washington, DC 20010, United States

Abstract

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.

Funder

National Institutes of Health

National Center for Advancing Translational Science

National Human Genome Research Institute

National Heart Lung and Blood Institute

National Institute of General Medical Services

American Heart Association

Publisher

Oxford University Press (OUP)

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