YOU Can Help Accelerate ROS1 Research!

If you think you might have a medically necessary biopsy or pleural fluid draining in your future, please consider donating your excess tumor tissue or fluid to the ROS1 Cancer Model Project!

What’s a cancer model and why do we need them?

Cancer models allow us to study cancer outside the human body. One type consists of immortalized human cancer cells in a lab dish—like the HeLa cells in “Immortal Life of Henrietta Lacks—called cell lines.  Another consists of human cancer cells growing under the skin of a mouse–called a patient-derived xenograft (PDX) mouse.

Cancer researchers use these models to examine ROS1 biology and drug resistance, develop new biomarker tests, and find new treatment options. In early 2017, only a few ROS1 fusion positive cell lines and one ROS1 fusion positive PDX model existed. This was a problem, since ROS1 can fuse with over 20 other genes, and is found in over 12 different cancers. Also, none of the cell lines were from tumors that had developed resistance to crizotinib or other ROS1 drugs.

What is the ROS1 Cancer Model Project?

We need more of both types of cancer models. To make them, we need live cancer cells donated by patients. The ROS1 Cancer Model Project is making that happen.

The project was developed by a partnership of The ROS1ders, The Bonnie J. Addario Lung Cancer Foundation (now the GO2 Foundation for Lung Cancer), Addario Lung Cancer Medical Institute (ALCMI), University of Colorado, Vanderbilt University, and Champions Oncology. Here’s how it works. ROS1 patients who have an upcoming biopsy or thoracentesis arrange in advance to donate their excess fresh tumor tissue and pleural fluid to either the Doebele Lab at University of Colorado to create cell lines, or to Champions Oncology to create PDX mice. The models are genomically analyzed, then shared freely with academic ROS1 researchers to accelerate research into our disease.  Note that ROS1 PDX models seem to be more difficult to create than cell lines, and take longer to mature into models that can be shared.

Our tissue and pleural fluid donations have created four new ROS1 cell lines, which has doubled the number of ROS1 cell lines available for research, and have started development of 3 PDX (patient-derived xenograft) mouse models.

What happens to cancer models created from ROS1der donations? 

The cancer models created from our donations are shared freely (for the cost of shipping) with academic researchers to accelerate research.  They are also available for a fee to pharmaceutical firms and industry.  We are working to set up a system that will annotate our cell lines with relevant information from medical records to make them even more useful to researchers.

Thus far, four new ROS1 cell lines have been created by this project, which doubled the number of ROS1 cell lines available to researchers. Those cell lines have been shared with five other institutions researching ROS1 cancers thus far:

Our cell lines have also been used in published studies of ROS1 biology, resistance mechanisms, and biomarker testing:

One attempted PDX model was abandoned because it did not grow, which highlights the difficulty in creating these models and the importance of receiving more fresh tissue and pleural fluid from ROS1 patients.

How can I donate my tumor tissue or fluid specimen?

As soon as you know you’ll have a biopsy or thoracentesis (draining of pleural fluid), contact Nurse Alicia at +1 (866) 988-ROS1 or  We need at least three days notice to ship the collection kits to you (for the cell lines) or your doctor (for the PDX models)—a week would be better.  If possible, please ask for your procedure to be scheduled on Monday through Thursday.

Tissue and fluid donations must be received at the lab for processing within 24 hours of collection to give researchers the best chance of creating a successful model.  This and differing research regulations in other countries limits the regions from which we can accept donations.  Tissue and fluid donations can currently be accepted from patients in the USA, Puerto Rico, and Canada.  We are working on making this research opportunity accessible in other countries through Champions or other academic centers.

How else can I help promote ROS1 research?

Donate to our research fund.  The labs creating our cancer models (the Doebele Lab at University of Colorado and Champions Oncology) are funding some of the work via grants received and internal funding.  The ROS1ders also raised over $300,000 to fund the Cancer Model Project. You can donate to The ROS1ders patient-driven research projects by giving to any of the ROS1 fundraising pages here–choose to donate in honor of individual ROS1ders, or give to the general account. All funds go into a dedicated ROS1 fund at GO2 Foundation for Lung Cancer, a 501(c)(3) nonprofit.

Help spread the word!  Share the graphic below on social media. Share the information on this page with your doctor.