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

April 17, 2018, CU Anschutz Medical Campus
Global ROS1 initiative: A patient-researcher collaboration targeting ROS1 cancer
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. 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 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 Thoracic Oncology Research Initiative, and in partnership, CU, the Global ROS1 Initiative and the Bonnie J. Addario Lung Cancer Foundation created a program in which could donate cancer tissue for use in establishing .

"We have already received four remote tumor samples and generated two new ROS1 cell lines from patients who never even had to travel to University of Colorado," says Doebele.

Members of the Global ROS1 Initiative have also been involved in an epidemiological survey with the goal of better understanding patient characteristics associated with ROS1 cancers. Results of this survey will be presented at AACR. Another project has surveyed the group to discover the percentage of ROS1 patients who have experienced brain metastases. An ongoing project hopes to discover if the sequence of treatments used against ROS1 cancer impacts outcomes.

"We have a larger number of patients in our group than on any single clinical trial, so we hope this will be an opportunity for researchers to learn about us and a way for us to learn more about our condition. We're working with clinicians and researchers to figure out how our group can best accelerate research," Freeman-Daily says.

The group represents a trend in oncology to move away from defining cancer by the site where it occurs and toward defining cancer by the genetic changes that create it. Following the model of the Global ROS1 Initiative are groups organized around ALK, EGFR and HER2, all of which have been found to cause multiple cancer types.

"This may be a more functional, precision medicine approach to certain types of cancer," says Robert. C. Doebele, MD, PhD. "More and more we're showing that cancers caused by ROS1 or many other genetic drivers may be treated with similar drugs no matter where the cancer lives in the body."

The group, which can be found at ("Because I couldn't figure out how to make Wordpress give us a .org," says Freeman-Daily), includes over 200 ROS1+ patients across 20 countries.

"We provide support and education for each other, help find treatments and clinical trials, and talk about side effects. And we bring information we learn from our doctors back to the group," Freeman-Daily says.

Eventually, this innovative model may also bring treatments to the that would otherwise have been impossible.

Explore further: Two studies find resistance mechanisms in ALK+ and ROS1+ cancers

Related Stories

Two studies find resistance mechanisms in ALK+ and ROS1+ cancers

April 11, 2018
Targeted treatments have revolutionized care for lung cancer patients whose tumors harbor ALK or ROS1 alterations. Basically, cancers may use these genetic changes to drive their growth, but also become dependent on the action ...

Validation of an IHC screening tool for ROS1 gene rearrangements

May 11, 2016
Immunohistochemistry (IHC) is an effective tool that can be used for identifying proto-oncogene 1 receptor tyrosine kinase (ROS1) gene rearrangements and screening patients for the administration of the targeted therapy crizotinib, ...

Crizotinib treatment effective against ROS1-positive lung cancer

September 27, 2014
Treatment with the targeted therapy drug crizotinib effectively halts the growth of lung tumors driven by rearrangements of the ROS1 gene. In an article receiving Online First publication in the New England Journal of Medicine ...

Ros1 gene fusions found in 2.4% of Asian patients with lung adenocarcinoma, associated with young age at diagnosis

July 21, 2014
ROS1 fusion genes were successfully detected independent of gender or smoking history in young East Asian patients with lung adenocarcinoma, a histological subgroup in non-small cell lung cancer (NSCLC), using multiplex reverse ...

Study finds known lung cancer oncogenes ALK and ROS1 also drive colorectal cancer

December 17, 2013
A University of Colorado Cancer Center study published online ahead of print in the journal Molecular Cancer Research shows that ALK and ROS1 gene rearrangements known to drive subsets of lung cancer are also present in some ...

NEJM reports positive results for larotrectinib against TRK-fusion cancer

February 22, 2018
In 2013, the labs of University of Colorado Cancer Center investigator Robert C. Doebele, MD, PhD, and Dana-Farber Cancer Institute investigator Pasi A. Jänne, MD, PhD reported in Nature Medicine the presence of TRK gene ...

Recommended for you

New drug seeks receptors in sarcoma cells, attacks tumors in animal trials

December 13, 2018
A new compound that targets a receptor within sarcoma cancer cells shrank tumors and hampered their ability to spread in mice and pigs, a study from researchers at the University of Illinois reports.

Surgery unnecessary for many prostate cancer patients

December 13, 2018
Otherwise healthy men with advanced prostate cancer may benefit greatly from surgery, but many with this diagnosis have no need for it. These conclusions were reached by researchers after following a large group of Scandinavian ...

Combining three treatment strategies may significantly improve melanoma treatment

December 12, 2018
A study by a team led by a Massachusetts General Hospital (MGH) investigator finds evidence that combining three advanced treatment strategies for malignant melanoma—molecular targeted therapy, immune checkpoint blockade ...

Lethal combination: Drug cocktail turns off the juice to cancer cells

December 12, 2018
A widely used diabetes medication combined with an antihypertensive drug specifically inhibits tumor growth—this was discovered by researchers from the University of Basel's Biozentrum two years ago. In a follow-up study, ...

Researchers use computer model to predict prostate cancer progression

December 12, 2018
An international team of cancer researchers from Denmark and Germany have used cancer patient data to develop a computer model that can predict the progression of prostate cancer. The model is currently being implemented ...

An integrated approach to finding new treatments for breast cancer

December 12, 2018
Unraveling the complexity of cancer biology can lead to the identification new molecules involved in breast cancer and prompt new avenues for drug development. And proteogenomics, an integrated, multipronged approach, seems ...


Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.