Abstract 4766: The Global ROS1 Initiative: A patient-researcher partnership generating open-source, oncogene-driven cancer models and data
Authors: Freeman-Daily Janet , Goldman Lisa , Tomalia Tori , ROS1ders The , Lovly Christine M. , Patel Manali I. , Shaw Alice T. , Addario Bonne J. , Walia Guneet , Young Steven W. , Doebele Robert C. 
Published: August 2018

Abstract
Background: Genomic fusions between ROS proto-oncogene 1 receptor tyrosine kinase (ROS1) and more than 20 genes drive many types of cancer. Only a handful of ROS1-positive (ROS1+) cancer models exist to use in research and developing new treatments. Few research facilities encounter ROS1+ patients–the incidence of ROS1+ cancer is only 1% to 2% in non-small cell lung cancer (NSCLC) and ROS1 testing is rarely done in other cancers. To address this, a group of ROS1+ patients and caregivers (“the ROS1ders") collaborated with advocacy organizations, researchers and industry to form the Global ROS1 Initiative.
Methods: The ROS1ders and partners informed patients, caregivers, and clinicians of the initiative through social media, patient blogs, websites, distribution of fliers in several languages at cancer conferences, and contacts with their clinicians. The ROS1der online community shared ROS1+ information about treatment options and side effects, expert clinicians, clinical trials, research and general support. An epidemiologic survey captured data about ROS1 patient histories and treatments. When a member in the ROS1der community shared news of an upcoming surgery, biopsy or thoracentesis, a ROS1der leader told them of an opportunity to donate excess fresh specimens to create cancer models. Tumor samples and resulting cell lines underwent drug testing and sequencing for mechanisms of resistance.
Results: The ROS1ders members include 166 patients (more than twice the largest ROS1 clinical trial cohort to date) from 16 countries representing 6 types of ROS1+ cancer. Four attempted fresh specimen donations resulted in 2 new ROS1+ cells lines, CUTO27 (CD74-ROS1) and CUTO28 (TPM3-ROS1). These cell lines have already been distributed to academic and industry partners to increase the value of these rare resources. The ROS1ders shared study results within their online group. The Initiative is now working to continue the longitudinal epidemiologic survey and create clinical studies that will generate ROS1+ cell lines and/or patient-derived xenograft (PDX) mouse models. We will conduct genomic analysis of the models to determine the presence of resistance mutations as well as ROS1 pairing partner genes. The resultant renewable tissue resources of PDX models and cell lines, when linked to the clinically annotated genomic database, will be broadly shared to help clinical and translational research understand mechanisms of response and resistance to therapies, and assist in drug development.
Conclusions: This project demonstrates that partnerships between patient-caregiver groups, advocacy groups, researchers and industry, combined with social media outreach, can increase the available oncogene-driven patient data, specimens, and cancer models in small, geographically distributed patient populations.
Citation Format: Janet Freeman-Daily, Lisa Goldman, Tori Tomalia, The ROS1ders, Christine M. Lovly, Manali I. Patel, Alice T. Shaw, Bonne J. Addario, Guneet Walia, Steven W. Young, Robert C. Doebele. The Global ROS1 Initiative: A patient-researcher partnership generating open-source, oncogene-driven cancer models and data [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2018; 2018 Apr 14-18; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2018;78(13 Suppl):Abstract nr 4766.