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Register for the 2022 ROS1ders Research Roundtable

Updated: Aug 15, 2022

“Real-World Data for ROS1+ Cancer”

May 3, 2022

12:00pm to 3:00pm (Pacific Time)

Fewer than 2000 cases of ROS1+ cancer are diagnosed in the USA each year, and the numbers are similarly low world wide. Most physicians will never meet a patient who has it, and few clinics see enough patients to generate useful research and clinical care data. How then do we gather information for evidence-based treatment of ROS1+ cancer?

The ROS1ders believe collecting diagnosis, treatment, outcome and patient experience information from an international group of patients over time is our best option for identifying optimal care (or gaps in care) as well as generating hypotheses for future preclinical and clinical research. Enter Real-World Data (RWD), the subject of our 2022 ROS1ders Research Roundtable.

This webinar will feature two informational talks followed by a panel discussion among an international group of clinicians, researchers, patients, and caregivers experienced in ROS1+ cancer. Our goal is to collaboratively begin to develop an international ROS1+ cancer RWD project. The event will be recorded and summarized in a white paper.

We hope you can join us for what promises to be a thoughtful discussion of RWD collection to improve care and outcomes for patients living with ROS1+ cancers.

**Please note that your Registration Confirmation will come from "ZOOM"**


  1. Welcome from The ROS1ders

  2. Introduction of panelists

  3. Invited presentations followed by Q&A

  4. Panel Discussion

    1. What ROS1+ cancer research questions of interest might we answer with RWD?

    2. What RWD can we collect to help answer the research questions?

    3. How do we ensure data sharing with all interested parties?

  5. Next Steps for ROS1+ cancer RWD

Confirmed Panel Participants

(check back for updates)

Invited Speakers

  • Corrie Painter, PhD, The Broad Institute of Harvard and MIT Associate Director of Operations and Scientific Outreach, Broad Cancer Program Associate Director of Count Me In Topic: “Examples of successful patient-driven RWD projects”

  • Bellinda King-Kallimanis, PhD, LUNGevity Foundation, Director of Patient-Focused Research Topic: “Types of RWD that could generate real-world evidence”


  • Amy Moore, PhD, LUNGevity Foundation, Vice President of Global Engagement and Patient

ROS1 Expert Clinicians

  • Benjamin Besse, MD, Gustave Roussy (France)

  • Antonio Calles, MD, Hospital General Universitario Gregorio Marañón (Spain)

  • Sai-Hong I. Ou, MD, PhD, University of California at Irvine (USA)

  • Jessica Jiyeong Lin, MD, Massachusetts General Hospital (USA)

  • Christine Lovly, MD, PhD, Vanderbilt Ingram Cancer Center (USA)

  • Tom Newsom-Davis, MD, Chelsea and Westminster Hospital NHS Foundation Trust (UK)

  • Tejas Patil, MD, University of Colorado (USA)

  • Sanjay Popat, MD, The Royal Marsden NHS Foundation Trust (UK)

  • Ben Solomon, MBBS, PhD, Peter MacCallum Cancer Centre (Australia)

  • Anthonie van der Wekken, MD, University of Groningen and University Medical Centre Groningen (Netherlands)

  • Santiago Viteri, MD, La Unidad de Oncología de Clínicas Mi (UOMI) Cancer Center (Spain)

  • Jürgen Wolf, MD, Lung Cancer Group Cologne (LCGC), University Hospital of Cologne (Germany)

The ROS1ders

  • Janet Freeman-Daily , MS, Eng, patient, research advocate, cofounder (USA)

  • Merel Hennink, patient, research advocate (Netherlands)

  • Baerbel Soehlke, patient, research advocate (Germany)

  • Lillian Leigh, patient, research advocate (Australia)

  • Upal Basu Roy, PhD, MPH, research advocate and Board Member (USA)

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1 Comment

This is fantastic! Thank you to all of you putting this together. What can I do to help?

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