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Tori Tomalia



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    MA22 - Partnering with Patients to Understand Stigma, Disparities and Values Leading to Improved Lung Cancer Care (ID 154)

    • Event: WCLC 2019
    • Type: Mini Oral Session
    • Track: Advocacy
    • Presentations: 1
    • Now Available
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      MA22.03 - The ROS1ders: Partnering to Drive Research and Improve Outcomes in ROS1+ Cancers (Now Available) (ID 2751)

      15:45 - 17:15  |  Author(s): Tori Tomalia

      • Abstract
      • Presentation
      • Slides

      Background

      ROS1 fusions are found in a dozen types of cancer. However, these fusions are rare, occurring in a small fraction of patients (e.g.,1%-2% of non-small cell lung cancer). The small population hampers gathering sizeable patient cohorts and investment in medical research. The ROS1ders are a group of patients and caregivers dealing with ROS1-positive (ROS1+) cancer who strive to better outcomes for all ROS1+ cancers by supporting patients and caregivers, increasing awareness and education, accelerating research, and improving access to effective diagnosis and treatment.

      Method

      We created a private ROS1+ Facebook group for sharing personal information and support among patients and caregivers. We created a public Facebook group for outreach. We launched a website at ROS1cancer.com to share sourced information about ROS1 drugs, clinical trials, expert clinicians, and research developments as well as patient blogs and tips for living with our disease. We attended medical conferences and met with cancer advocacy organizations, clinicians, researchers, and industry; we collectively began working on projects to accelerate research into our disease through the Global ROS1 Initiative. We are active in developing and implementing our projects as well as serving as fundraisers and the ROS1+ public face.

      Result

      The ROS1ders is the largest cohort of ROS1+ patients and caregivers ever collected. We add new members weekly, and have grown to include 400+ members from 28 countries. We network with ROS1+ communities who communicate in languages other than English in Europe, China and Japan. Expert ROS1 clinicians collaborate with us to ensure we provide accurate information about our disease in our Facebook groups and our website. ROS1+ patients have donated fresh tissue and pleural fluid specimens to the ROS1 Cancer Model Project to create cell lines and patient-derived xenograft (PDX) mice; the resulting cell lines have been shared with several institutions in academia and industry. We have contributed data to an epidemiological study. We are collaborating to develop a registry-based study of blood clots in ROS1+ and other lung cancer patients. Some ROS1ders are developing new projects in their home countries.

      Conclusion

      The ROS1ders are breaking new ground, sharing current information, collecting data and biospecimens from ROS1+ patients, and enabling research and development of treatments for our cancer in ways that were not possible before. The Global ROS1 Initiative is truly a partnership between patients, caregivers, advocacy organizations, clinicians, researchers, and industry.

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