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Ivy Elkins



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    OA10 - Right Patient, Right Target & Right Drug - Novel Treatments and Research Partnerships (ID 910)

    • Event: WCLC 2018
    • Type: Oral Abstract Session
    • Track: Targeted Therapy
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/25/2018, 10:30 - 12:00, Room 106
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      OA10.02 - Oncogene-Driven Patient Groups: A New Era For Research Partnerships (ID 13519)

      10:40 - 10:50  |  Author(s): Ivy Elkins

      • Abstract
      • Presentation
      • Slides

      Background

      Genomic alterations drive more than 60% of non-small cell lung cancer (NSCLC). About 20% of NSCLC cases (EGFR, ALK, ROS1, BRAF) will have an oncogenic driver that can be treated with approved targeted therapy drugs, and more have clinical trial options. In some cases, patients on targeted therapies will have years of good quality of life. However, targeted therapies do not cure, and these patients will eventually see their cancer progress. Patients and caregivers dealing with cancers driven by EGFR, ALK, ROS1 and Exon20 oncogenes have organized globally into online groups and are building partnerships that seek to provide support, increase awareness and education, accelerate and fund research, and improve access to effective diagnosis and treatment.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      Each patient-caregiver group forms using social media, patient blogs, websites, fliers, newsletters, and contacts with clinicians. Each has a private Facebook group or other network to inform and educate patients and caregivers of approved and experimental treatments, share common experiences, provide information and tips from expert clinicians and researchers, and enable real-life connections. Each group sets its own priorities such as creating websites, raising funds for research, donating tissue, developing studies of demographics and treatment sequences, and creating biorepositories with annotated specimens that will be made widely available. These projects are accomplished in patient-driven partnership with researchers, clinicians, advocacy groups, and industry. None of the patient-caregiver groups are corporations or other types of legal entities.

      4c3880bb027f159e801041b1021e88e8 Result

      The ROS1ders focus on ROS1+ cancers of all types and include over 275 members from 21 countries across 8 cancer types. They have partnered in two studies to create ROS1+ cancer models. ALK Positive focuses on ALK+ NSCLC and other cancers, and includes over 1000 members from 38 countries. They have raised nearly $400,000 for research and will announce two grants in May. Exon 20 Group focuses on EGFR and HER2 insertions in Exon 20, and includes 110 members from 19 countries. They created an Exon 20 molecular tumor board and awarded two grants. The EGFR Resisters focus on EGFR+ NSCLC and cancers that develop resistance to EGFR targeted therapies, and include over 450 members from 20 countries.

      8eea62084ca7e541d918e823422bd82e Conclusion

      Oncogene-driven patient-caregiver groups are creating a new paradigm in cancer research and have demonstrated that their partnerships with advocacy organizations, clinicians, researchers and industry, combined with social media outreach, can increase available patient data, specimens, cancer models and research funding for geographically distributed, oncogene-driven cancer populations.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    P1.02 - Advocacy (Not CME Accredited Session) (ID 934)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/24/2018, 16:45 - 18:00, Exhibit Hall
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      P1.02-04 - The EGFR Resisters Lung Cancer Group: A Patient-Driven Initiative to Understand & Improve Treatments for EGFR+ Lung CancerĀ  (ID 12001)

      16:45 - 18:00  |  Author(s): Ivy Elkins

      • Abstract
      • Slides

      Background

      Lung cancer patients harboring mutations in the EGFR gene represent a significant amount of patients diagnosed with non-small cell lung cancer (NSCLC). Approximately 10-15% of patients with NSCLC in the United States (U.S.) and 35% in Asia have an EGFR mutation. In the U.S., more than 20,000 people with EGFR-positive lung cancer are diagnosed each year.

      Although there has been an increase in progression-free survival in patients due to EGFR tyrosine kinase inhibitors (TKIs), patients eventually develop acquired resistance. With each generation of TKIs developed, more mechanisms of resistance are discovered; therefore the development of drugs to target resistance mutations and other mechanisms of resistance are desperately needed.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The EGFR Resisters is a group of people living with and/or personally affected by EGFR-positive lung cancer. The purpose of founding the group is to build a community of survivors and caregivers to share knowledge, provide support, and confidentially collect patient data (such as patient demographics, details of lung cancer diagnosis, specific type of EGFR mutation, acquired resistance and mechanism of resistance). Patient data will be aggregated and analyzed to identify trends such as commonalities and differences in mechanisms of resistance.

      The goal of the EGFR Resisters is to improve outcomes for people with EGFR-positive lung cancer by accelerating research. Our ultimate objective is changing EGFR-positive lung cancer into a manageable chronic disease.

      4c3880bb027f159e801041b1021e88e8 Result

      EGFR Resisters is comprised of nearly 400 members from 20 countries. Out of the 60% of members who have provided data, 65% have already developed acquired resistance to their current EGFR TKI. The types of resistance mechanisms seen in this community are consistent with results that have been published from other studies.

      Since the launch of our website (www.egfrcancer.org) in February, we have been contacted by numerous stakeholders from academia, research and industry who are interested in collaborating with the EGFR Resisters to help further our goal.

      8eea62084ca7e541d918e823422bd82e Conclusion

      We are working to increase the size of our EGFR Resisters community with the assistance of advocacy groups and medical professionals. We are also building relationships with EGFR thought leaders in the scientific and medical community to identify practice gaps and develop an action plan for educational and research efforts. Our aim is to use the strength of our collaborations to drive important research questions and fund novel research and clinical trials.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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