ROS1 is a rare cancer--occurring in less than 2% of lung cancers, and in unknown frequency in other cancers--and therefore the number of patients available for study are limited.
Research might help to keep current and future ROS1 patients alive longer. As ROS1 patients, we can accelerate research in ways no one else can. We can share our personal information, medical history, and specimens for study, as well as participate in clinical trials.
Through social media and online patient communities, ROS1 patients are working together to help researchers discover risk factors for ROS1 cancer, the biology of ROS1 cancer, and even new treatments for our disease. The Bonnie J. Addario Lung Cancer Foundation has partnered with ROS1 patients to facilitate this research for all cancers (not just lung cancer).
This survey is being conducted by ROS1 patients for ROS1 patients. Its purpose is to determine how many ROS1 patients might be available to participate in research, and whether they are willing to participate. The moderators of the ROS1cancer.com website (all of whom are ROS1 patients) will have access to all the data in this survey. Any names provided will be used only to ensure each entry represents a unique ROS1 patient.
A summary of the information in this poll, without any names, will be posted on the ROS1cancer.com and on the Bonnie J. Addario Lung Cancer Foundation ROS1 page at https://www.lungcancerfoundation.org/ros1/.
This poll contains only ten questions. We tried to keep it as simple as possible. You can skip any questions you want, but given that so few ROS1 patients exist, skipping questions will hamper our ability to facilitate research into our disease.
PLEASE COMPLETE THIS POLL ONLY IF YOU ARE A PATIENT WHO HAS BEEN DIAGNOSED WITH A ROS1-POSITIVE CANCER ANYWHERE IN THE BODY, OR ARE A CARER WHO SPEAKS FOR A ROS1 PATIENT.