ROS1+ Patients

Global ROS1 Initiative

ROS1 fusions occur in several cancer types- non-small cell lung cancer, gastric cancer, ovarian cancer, glioblastoma, cholangiocarcinoma, melanoma etc. In each of these cancers, ROS1 fusions account for a small sliver of the pie, accounting for 1-2% of all diagnoses, forming a relatively rare molecular subset of cancer. The Bonnie J. Addario Lung Cancer Foundation (ALCF) and the Addario Lung Cancer Medical Institute (ALCMI) would like to focus on this under-studied rare molecular subset of cancer and understand what drives oncogenesis and disease progression in these tumors. Therefore, in collaboration with cancer patients whose tumors have ROS1 fusions (the ROS1ers), we are launching a global effort to study ROS1 fusions across ALL tumor types.

Under this effort, we will:


  • Provide a space for ROS1 fusion-positive cancer patients to connect with each other, and network.
  • Collaborate with all stakeholders involved in the research and clinical medicine processes – patients, pharma, biotechs, healthcare providers etc. to streamline global effort in this space.
  • Establish a bio-specimen repository to offer researchers a resource to ask critical questions to understand the biology of this disease.
  • Fund research to understand ROS1 fusion tumor biology, response to targeted therapy, development of treatment resistance, use of combination treatment strategies, understanding the best therapy sequencing strategies.
  • Establish a data repository from all the data that is generated from ROS1 focused research, and make it open-sourced in hopes of accelerating further research in this area.

The first step is an online survey to understand ROS1-positive cancer patients’ diagnosis and treatment journey as well as any family and/or exposure history among other factors that might have contributed to the development and progression of their cancer. Cancer patients whose tumor tested positive for the ROS1 gene fusions (using any type of genomic testing) are eligible to participate in this survey, which will be available on this page starting May 18, 2016. The survey will be available on our website on an ongoing basis, however, the first round of data analysis will commence on July 15, 2016. ALCF is working with ROS1 patient communities to study this rare cancer for the benefit of ROS1-positive patients across ALL cancer types. We invite you to spread the word on this global effort and join hands with us to make it a success!

Global ROS1 Initiative Video

ALCF & ALCMI are partnering with ROS1 patients on a Global ROS1 Initiative. Watch the video to learn more about the what is planned for this initiative including creating an open-access data repository (epidemiology studies, registry), creating an open-access biorepository (tissue, blood, PDX+cell lines), and spurring collaborative research (new drug development, resistance mechanisms).

2016 Gala Video

We are focused on patient-driven research to further our mission of increasing survival. Watch the video below from this year’s Gala for more about what we are doing to support the ROS1+ community.