The Global ROS1 Initiative is a partnership between several stakeholders interested in ROS1 positive (ROS1+) cancer (also called ROS1 rearranged or ROS1 fusion cancer):
- The ROS1ders, an international group of patients and carers dealing with ROS1+ cancer spread over 19 countries
- Patient-focused nonprofits Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI)
- Clinicians who treat ROS1+ patients
- ROS1 researchers
- Pharma and biotech companies
If you would like to participate in the Global ROS1 Initiative, please contact Guneet Walia at the Bonnie J. Addario Lung Cancer Foundation, or contact the ROS1ders using our “Contact Us” form on this website.
We will announce our progress and new initiatives on this website’s blog–check regularly for more updates!
Aims of the Global ROS1 Initiative
- Connect ROS1+ cancer patients and carers to each other to share experiences and support
- Collaborate with the global ROS1+ community to share knowledge about ROS1+ cancer; help patients access testing, targeted therapies, and clinical trials; improve patient outcomes; and accelerate development of new treatments
- Promote and fund research to develop new treatments and study ROS1+ cancer biology, response to targeted therapy, treatment sequence strategies, and mechanisms of drug resistance
- Project 1: Establish an open-source databank of our project data (with personal information removed) that will be available to researchers and participating patients
- Project 2: Establish a biorepository of ROS1+ cancer models for researchers (built from specimen donations by ROS1ders)
Connecting ROS1+ Patients And Carers
ROS1+ patients created a space where ROS1+ patients and carers can safely share experiences concerns: the private “ROS1 Positive (ROS1+) Cancer” Facebook group. To join:
1) Fill out this form: https://goo.gl/forms/o4ZU9zFQFyXKX4rm2, and 2) Go to https://facebook.com/groups/ROS1cancer/ and request to join the group.
Collaborating with the Global ROS1 Community
The ROS1ders created this website to share information about ROS1 cancer, treatments, clinical trials, patient-driven research, and living with our disease. We also created a public Facebook group to create a forum for discussing ROS1 news and research. The Bonnie J. Addario Lung Cancer Foundation supports ROS1 patients and carers, and enables ROS1 research through partnerships and funding. ROS1ders and ALCF staff network with clinicians and academic researchers via email and at oncology conferences. When a ROS1 researcher was contemplating a new clinical trial, ROS1ders shared de-identified data on our brain metastases and treatment histories to help inform the trial design.
Promoting and funding research
ALCF and the ROS1ders are raising funds to support ROS1+ research projects and develop tools that will help accelerate research and treatments for ROS1+ cancers.
Project 1: ROS1+ Survey and Registry
ALCF funded a research study to collect ROS1+ cancer patients’ histories using an online survey and analyze commonalities that might have contributed to the development of their cancer. Any patient who tests positive for a ROS1 gene fusion (using any type of testing) is eligible to participate in the survey.
ALCF will be modifying their Lung Cancer Registry to enable ROS1+ patients with any type of cancer to participate. This registry will have the ability to collect electronic health records, recommend potential clinical trials, and provide de-identified data for selected researchers at no cost. This registry will be also used to administer surveys of ROS1ders. Data from the survey will eventually be transitioned into this registry.
Project 2: Biorepository
ALCMI is leading a project (funded by ALCF and ROS1ders) to create new ROS1 cancer models from fresh biopsy and surgery specimens donated by ROS1ders. This project will hopefully ensure available ROS1 cancer models are more representative of the many known gene fusion partners and organs of origin. Academic researchers will have free access to these models.
HELP FUND OUR PATIENT-DRIVEN RESEARCH!
You can donate to a special fund earmarked for ROS1 projects at the Bonnie J. Addario Lung Cancer Foundation, a 501(c)(3) charity. Visit sit https://www.supportalcf.org/ROS1 to get started.
Last updated 23-May-2017