Hi, I'm Janet Freeman Daly, a lung cancer patient with ROS1 positive cancer, a research advocate and co-founder of the ROS Wonders. Today I'm going to tell you about the virtual research roundtable the ROS Wonders hosted last fall and a call to action we generated based on the findings. These are my disclosures. The ROS Wonders is an international group of patients and caregivers living with ROS1 positive cancer with a mission to improve outcomes for all ROS1 positive cancers through community education and research. We host a private Facebook group for patients and caregivers, a website with information about clinical trials, expert clinicians and treatment options. And we also, as a nonprofit organization, conduct and support research. While we acknowledge that raising funds is an effective method for accelerating research, we also want to explore options for partnering to develop and conduct projects that specifically address unmet needs and research questions that are important to patients. We have several resources available to help with patient-driven research. Resources we offer include an international cohort of patients who have ROS1 positive cancer funding, patient-derived models that are genomically characterized, and real-world patient experience data in both formal studies and informal polls. Our goals for these roundtables were threefold, define barriers to ROS1 research, discuss ways to sustain and accelerate ROS1 research, and identify projects in which the ROS Wonders could participate and help to drive research forward. The roundtable found the main barriers to ROS1 research are the fact that our patient population is small, that there's a lack of data on the patient treatment experience, clinical issues such as off-target acquired resistance, and the difficulty acquiring major grants when the patient population is small and therefore the perceived impact is small. The roundtable found several opportunities for accelerating ROS1 research, such as to promote universal ROS1 testing for all solid tumors, expand access to ROS1 specimens, models, and study results, leverage real-world data, and study novel mechanisms of resistance. The roundtable also found several opportunities for sustaining ROS1 research, such as sharing best practices for collecting specimens and creating models, broadening the study of acquired TKI resistance to include off-target mechanisms that are common across multiple oncogene-driven cancers, and building the field of ROS1 researchers by attracting and retaining young investigators. After reviewing roundtable findings, the ROS Wonders focused on creating a call to action that would address these findings. Our plan to keep ROS1 cancer research moving includes current projects and new projects, as well as expanding our network of global ROS1 patients and research partners. We will continue to create and characterize ROS1 cancer models in partnership with academia and explore ways to increase dissemination of models and share associated genomic data. We will also continue to explore ways to collect real-world data from ROS1 patients. Our new projects will collaboratively develop standardized frameworks for characterizing models of the rare oncogene-driven cancers, generating patient experience surveys across an international cohort, and sharing real-world genomic patient data across the international researchers and institution. Our hope is that these frameworks will prove useful for other rare oncogene cancers besides ROS1. I want to acknowledge all of those whose time and support made these roundtable events and the resulting white paper possible, especially Dr. Upal Basuroy and Dr. Amy Moore. Thank you for your time.

lung cancer

ROS Wonders

virtual research roundtable

barriers

ROS1 research