WCLC 2018: Oncogene-Driven Patient-Caregiver Communities Creating New Paradigm for NSCLC Research


A recent review of patient-caregiver communities focused on non–small cell lung cancer (NSCLC) with genomic alterations showed that these groups are improving outcomes by supporting patients and caregivers, increasing awareness and education, and accelerating research. Patient advocate Janet Freeman-Daily, cofounder of the community known as The ROS1ders; Robert C. Doebele, MD, PhD, of the Division of Medical Oncology at the University of Colorado; and Christine M. Lovly, MD, PhD, of the Vanderbilt University School of Medicine, presented these findings at the International Association for the Study of Lung Cancer 19th World Conference on Lung Cancer (Abstract OA10.02).

“These oncogene-driven groups created by patients and caregivers are ushering in a new era for lung cancer research partnerships,” said Ms. Freeman-Daily. “By collaborating with researchers, clinicians, advocacy groups, and industry, we are accelerating research into our own diseases.”

Oncogene-Driven Communities

Genomic alterations drive more than 60% of NSCLCs. Approximately 20% of NSCLC cases have an oncogenic driver—such as EGFR, ALK, ROS1, or BRAF—that physicians can treat with approved, targeted drugs and clinical trials. The communities, formed by patients and caregivers dealing with cancers driven by these oncogenes, use a variety of tools for education and support including websites, newsletters, social media, and blogs, and provide information about treatments, common experiences, tips from clinicians, and real-life connections. The growth of these groups is impressive:

  • ALK Positive focuses on anaplastic lymphoma kinase (ALK)–positive lung cancer and has more than 1,200 members from more than 40 countries
  • Exon 20 Group focuses on epidermal growth factor receptor (EGFR) and HER2 exon 20 insertions and has 243 members from 22 countries
  • The ROS1ders focuses on ROS-positive cancer of all types, and has 323 members from 22 countries across 8 cancer types
  • EGFR Resisters focuses on EGFR-positive NSCLC as well as cancers that develop resistance to EGFR-targeted therapies, and has more than 650 members from 24 countries
  • RET Renegades, which formed only a few months ago, has 43 members from 2 countries.

"It is an honor to work with this team of amazing lung cancer patients, advocates, and scientists,” said Dr. Lovly, who works with the ROS1ders. “Patient-partnered research is critical to build better treatments for and bring hope to all [patients with] lung cancer.”

These groups accelerate research in many ways, including:

  • ALK Positive partnered with LUNGevity Foundation to award three NSCLC grants totaling $600,000 in May 2018
  • Exon 20 Group partnered with International Cancer Advocacy Network to assist patients in identifying and enrolling in clinical trials and fund research
  • The ROS1ders collaborated with the Bonnie J. Addario Lung Cancer Foundation and its sister foundation, the Addario Lung Cancer Medical Institute, to develop and fund two arms of the ROS1 Cancer Model Project. This project aims to create new ROS1 cell lines and patient-derived xenograft (PDX) mouse models from tissue and fluid donations collected from ROS1ders during medically necessary procedures. In early 2017, only a few ROS1 cell lines and one ROS1 PDX model existed. Today, Ms. Freeman-Daily announced two ROS1 PDX models are in development and researchers have created four new ROS1 cell lines that researchers will broadly distribute.

“The oncogene-driven patient groups are positioned to make a huge difference in these rare lung cancers,” said Dr. Doebele. “For ROS1-positive cancers, the ROS1 Cancer Model Project is essential for supporting ongoing research into the biology, testing, and drug development for the disease.”

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.




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