ROS1der Research


This page lists our patient-driven research studies into ROS1+ cancers.  ROS1+ cancer is a rare cancer, occurring in a small percentage of lung, gastric, and ovarian cancers, as well as in melanoma, glioblastoma, cholangiocarcinoma, angiosarcoma, and melanoma. The number of patients available for study at any one cancer center are limited.  As ROS1 patients, we can accelerate research in ways no one else can.  Through social media and online patient communities, ROS1 patients are helping researchers discover risk factors for ROS1 cancer, the biology of ROS1 cancer, and hopefully new treatments for our disease.

Global ROS1 Initiative

These studies are conducted by ROS1der research partners. Each has a Principal Investigator from an academic cancer center, and is overseen by an Institutional Review Board. Open access to resulting data will be expedited.

ROS1 Cancer Model Project – Currently OpenROS1 Cancer Model Project

Open to all patients with ROS1+ solid tumors
Goal: understand what drives tumor formation, therapeutic response, and acquired therapeutic resistance in ROS1 cancer
Cell Line Initiative Principal Investigator: Robert C. Doebele, MD, PhD, University of Colorado
PDX Study Principal Investigator: Christine Lovly, MD, PhD, Vanderbilt University Medical Center
Sponsor: Addario Lung Cancer Medical Institute
Start Date: April 13, 2018
Close Date: ongoing
Results: no results available yet
To Participate: If you have a biopsy or surgical procedure coming up, call our Nurse Alicia at 866-988-ROS1 (866-988-7671).

For more information on the Cell Line arm of this study, go to alcmi.net/research/ros1-cell-line-study.
For more information on the PDX arm of this study, go to alcmi.net/research/ros1-pdx-study.

ROS1+ Research Survey – Currently Open

Open to all patients with ROS1+ solid tumors
Goal: track patient histories and outcomes, and find commonalities among ROS1+ patients that might suggest causes for ROS1+ cancer
Principal Investigator: Dr. Manali I. Patel, Assistant Professor of Medicine (Oncology) at the Palo Alto Veterans Affairs Health Care System
Sponsor: Bonnie J Addario Lung Cancer Foundation
Start Date: May 18, 2016
Close Date: ongoing
Results: no results available yet
To Participate: go to http://www.lungcancerfoundation.org/patients/ros1/survey/ 

Short Polls across the ROS1der Cohort

The ROS1ders conduct short, informal polls among ROS1+ patients using Survey Monkey, and share the de-identified results on this website in hopes of accelerating research in and treatments for ROS1+ cancers.

Poll: Patient Interest in ROS1 Cancer Research – Currently Open

Goal: determine how many ROS1der patients might be available to participate in research, and whether they are willing to participate in research
Start date: November 2016
Close date: ongoing
Results: posted at http://wp.me/P6JQMq-iH  and updated periodically
To Participate: go to this webpage https://www.surveymonkey.com/r/N8S5P5K