The Oncology Research Information Exchange Network (ORIEN) - Building a real-world collaborative, patient-driven infrastructure for discovery research and precision oncology

Michelle Churchman; Xin Lu; David McKean; Michael Radmacher; Qi Zhang; Robert Rounbehler; Aik Tan; Timothy Shaw; Alyssa Obermayer; G Grass; Daniel Spakowicz; Ahmad Tarhini; Kenneth Shain; Rafael Canevarolo; Mark Meads; Ariosto Siqueira Silva; Praneeth Reddy Sudalagunta; Brandon Manley; Shane Huntsman; Deborah Collyar; Jill Kolesar; B Mark Evers; Nancy Single; Stephen Edge; Candace Johnson; George Weiner; Martin McCarter; Virginia Borges; Latrisha Horne; James Lillard; Dinesh Mudaranthakam; Julia White; Steven Libutti; Shridar Ganesan; Gregory Riedlinger; Thomas Loughran; Dina Halme; Margaret Johns; Cletus Arciero; Bodour Salhia; Abdul Rafeh Naqash; Craig Shriver; Kelvin Lee; Bryan Schneider; David Nix; Gary Fillmore; Howard Colman; Cornelia Ulrich; Brian Springer; Raphael Pollock; Emily Vucic; Jeff Sherman; Anshu Jain; William Dalton; Phaedra Agius; Erin Siegel

doi:10.21203/rs.3.rs-7077810/v1

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The Oncology Research Information Exchange Network (ORIEN) - Building a real-world collaborative, patient-driven infrastructure for discovery research and precision oncology

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The Oncology Research Information Exchange Network (ORIEN) - Building a real-world collaborative, patient-driven infrastructure for discovery research and precision oncology

Michelle Churchman, Xin Lu, David McKean, Michael Radmacher, Qi Zhang, Robert Rounbehler, Aik Tan, Timothy Shaw, Alyssa Obermayer, G Grass, …

Research square

Research Square

06/02/2026

DOI: 10.21203/rs.3.rs-7077810/v1

PMCID: PMC13252564

PMID: 42281974

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https://doi.org/10.21203/rs.3.rs-7077810/v1View

Preprint (Author's original) This preprint has not been evaluated by subject experts through peer review. Preprints may undergo extensive changes and/or become peer-reviewed journal articles. Open Access

Abstract

Over a decade ago, collaborating academic cancer centers formed the Oncology Research Information Exchange Network® (ORIEN) to develop a patient-driven, federated infrastructure for oncology research. Aster Insights is the network's operational, commercial, and research partner. Together ORIEN and Aster Insights have built a unique multimodal dataset on the active engagement and consent of patients who opted into the Total Cancer Care® (TCC) protocol to contribute their data and biospecimens for research. Over 400,000 cancer patients have been enrolled in TCC, >32,500 of which have an in silico "Avatar" generated to represent their individual patient experience and molecular profile to support a broad range of network and industry research use cases. We provide an overview of ORIEN's evolution, demonstrate the power of our data resources through a landmark analysis of >37,000 tumors across all cancer types collected for the Avatar program, and provide a vision for ORIEN to fuel collaborative research.

Details

Title: Subtitle: The Oncology Research Information Exchange Network (ORIEN) - Building a real-world collaborative, patient-driven infrastructure for discovery research and precision oncology
Creators: Michelle Churchman - ASTER
Xin Lu - ASTER
David McKean - ASTER
Michael Radmacher - ASTER
Qi Zhang - ASTER
Robert Rounbehler - ASTER
Aik Tan - University of Utah
Timothy Shaw - Moffitt Cancer Center
Alyssa Obermayer - Moffitt Cancer Center
G Grass - Moffitt Cancer Center
Daniel Spakowicz - The Ohio State University
Ahmad Tarhini - Moffitt Cancer Center
Kenneth Shain - Moffitt Cancer Center
Rafael Canevarolo - Moffitt Cancer Center
Mark Meads - Moffitt Cancer Center
Ariosto Siqueira Silva - Moffitt Cancer Center
Praneeth Reddy Sudalagunta - Moffitt Cancer Center
Brandon Manley - Moffitt Cancer Center
Shane Huntsman - ASTER
Deborah Collyar - Advocates for Youth
Jill Kolesar - University of Iowa
B Mark Evers - University of Kentucky
Nancy Single - The Ohio State University
Stephen Edge - Roswell Park Comprehensive Cancer Center
Candace Johnson - Roswell Park Comprehensive Cancer Center
George Weiner - University of Iowa
Martin McCarter - University of Colorado Cancer Center
Virginia Borges - University of Colorado Denver
Latrisha Horne - Morehouse School of Medicine
James Lillard - Morehouse School of Medicine
Dinesh Mudaranthakam - The University of Kansas Cancer Center
Julia White - The University of Kansas Cancer Center
Steven Libutti - Rutgers, The State University of New Jersey
Shridar Ganesan - Rutgers, The State University of New Jersey
Gregory Riedlinger - Rutgers, The State University of New Jersey
Thomas Loughran - University of Virginia Cancer Center
Dina Halme - University of Virginia Cancer Center
Margaret Johns - Emory University
Cletus Arciero - Emory University
Bodour Salhia - University of Southern California
Abdul Rafeh Naqash - OU Health Stephenson Cancer Center
Craig Shriver - Regional Cancer Center
Kelvin Lee - Indiana University Melvin and Bren Simon Comprehensive Cancer Center
Bryan Schneider - Indiana University School of Medicine
David Nix - Huntsman Cancer Institute
Gary Fillmore - University of Utah
Howard Colman
Cornelia Ulrich - Huntsman Cancer Institute
Brian Springer - Moffitt Cancer Center
Raphael Pollock - The Ohio State University
Emily Vucic - Zephyr Software (United States)
Jeff Sherman - Zephyr Software (United States)
Anshu Jain - ASTER
William Dalton - ASTER
Phaedra Agius - HealthInsight
Erin Siegel - Moffitt Cancer Center
Resource Type: Preprint
Publication Details: Research square
DOI: 10.21203/rs.3.rs-7077810/v1
PMID: 42281974
PMCID: PMC13252564
NLM abbreviation: Res Sq
ISSN: 2693-5015
eISSN: 2693-5015
Publisher: Research Square
Language: English
Date posted: 06/02/2026
Academic Unit: Pharmacy; Hematology, Oncology, and Blood & Marrow Transplantation; Pharmaceutical Sciences and Experimental Therapeutics; Obstetrics and Gynecology; Internal Medicine
Record Identifier: 9985174607002771

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