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
{"title":"Leveraging a global, federated, real-world data network to optimize investigator-initiated pediatric clinical trials: the TriNetX Pediatric Collaboratory Network.","authors":"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","doi":"10.1093/jamiaopen/ooae077","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Clinical research networks facilitate collaborative research, but data sharing remains a common barrier.</p><p><strong>Materials and methods: </strong>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.</p><p><strong>Results and discussion: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":36278,"journal":{"name":"JAMIA Open","volume":null,"pages":null},"PeriodicalIF":2.5000,"publicationDate":"2024-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11368118/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"JAMIA Open","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/jamiaopen/ooae077","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/10/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
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.
京公网安备 11010802042870号
京ICP备2023020795号-1
分享
求助内容：
应助结果提醒方式：
扫码关注我们
