As more patients with oncogene-driven non-small-cell lung cancer are treated with targeted therapies, they are joining forces online to form groups that provide support, education and advocacy focused on specific oncogenes. Herein, we discuss how the involvement of these groups in patient-partnered research can benefit both patients and lung cancer research.
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The authors thank the members of The ROS1ders, our research partners (the GO2 Foundation for Lung Cancer, the Addario Lung Cancer Medical Institute, Champions Oncology and LUNGevity Foundation); R. Doebele and R. Camidge of the University of Colorado; C. Lovly of Vanderbilt University; A. van der Wekken of the University Medical Center, Groningen; L. Drayer and M. Smelt of the Hanze University of Applied Science, Groningen; the pharmaceutical companies who make treatments for ROS1-positive cancers; and the network of patients, caregivers, advocates, volunteers, researchers, clinicians, non-profit organizations and donors who make our work possible.
The authors declare no competing interests.
ALK Positive: https://www.alkpositive.org/
ALK Positive on Facebook: https://www.facebook.com/groups/ALKPositive/
EGFR Resisters Lung Cancer Patient Group on Facebook: https://www.facebook.com/groups/EGFRResisters/
EGFR Resisters: https://egfrcancer.org/
Exon 20 group: https://exon20group.org/
The EGFR Exon 20 Support Group on Facebook: https://www.facebook.com/groups/136311127056022/
The ROS1ders Patient Group on Facebook “ROS1 Positive (ROS1+) Cancer”: https://www.facebook.com/groups/ROS1cancer/
The ROS1ders website: https://ros1cancer.com/
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Hennink, M., Vandeweyer, G. & Freeman-Daily, J. The roles of patient groups in fostering cancer research. Nat Rev Clin Oncol 17, 65–66 (2020). https://doi.org/10.1038/s41571-019-0314-1