Global ROS1 initiative: A patient-researcher collaboration targeting ROS1 cancer

IMAGE: Stage IV lung cancer survivor and patient advocate, Janet Freeman-Daily helps to lead Global ROS1 Initiative, organizing patients across cancer types around the oncogene that causes them. view more 

Credit: University of Colorado Cancer Center

Cancer patients have often organized support and informational groups around their disease types. Now a presentation at the American Association for Cancer Research (AACR) Annual Meeting 2018 describes the first research-focused group of patients organized around the genetic mutation that creates their cancer, namely changes to the gene ROS1. While “ROS1 fusion” has primarily been studied in lung cancer, the Global ROS1 Initiative includes ROS1-positive (ROS1+) patients with melanoma and pancreatic cancer as well. And in addition to offering information and support, the group is helping to drive the direction of research aimed at cancers caused by this gene.

“We talked with researchers and we heard that one thing holding back research was lack of ROS1 cancer models that researchers could use for experiments,” says Janet Freeman-Daily. As patient advocate at the University of Colorado Cancer Center Lung Cancer Specialized Program of Research Excellence (SPORE), Freeman-Daily spoke with Robert C. Doebele, MD, PhD, CU Lung SPORE PI and Director of CU Cancer Center


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