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.”
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:
"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:
“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®.