The Oncology Research Information Exchange Network (ORIEN) is a unique alliance to integrate “big data” and data sharing for cancer research and care. ORIEN was founded by The Ohio State University Comprehensive Cancer Center and Moffitt Cancer Center in May 2014 and now includes 19 members.
The foundation of the alliance is the common Total Cancer Care® (TCC) protocol, a longitudinal surveillance study of cancer patients that allows for lifetime consent, access to clinical outcomes data, genomic sequencing of tumors and the ability to recontact the patient. Member institutions agree to three basic principles in the protocol and consent: 1) follow the patient throughout their lifetime permitting sharing of data and information; 2) study the patient’s tumor using molecular technology; and 3) maintain contact with the patient.
As of October 2019, over 270,000 patients have consented to participate in TCC. The ORIEN Avatar Research Program was launched in 2016, which generates prospective molecular (NGS) data on patients that is linked to longitudinal clinical data. To date, over 15,000 patients are in the Avatar program. The OSUCCC – James has enrolled over 56,000 patients in TCC and provided over 3,900 patient cases toward the Avatar program.