A recent review of patient-caregiver communities focused on non-small cell lung cancer (NSCLC) with genomic alterations show that these groups are improving outcomes by supporting patients and caregivers, increasing awareness and education and accelerating research.
These findings were presented during the International Association for the Study of Lung Cancer’s (IASLC’s) 19th World Conference on Lung Cancer (WCLC) held September 23, 26, 2018 in Toronto, Canada, patient advocate Janet Freeman-Daily, co-founder of the community known as The ROS1ders, Robert C. Doebele, M.D., Ph.D. of the Division of Medical Oncology at the University of Colorado, and Christine M. Lovly, M.D., Ph.D. of the Vanderbilt University School of Medicine.
The World Conference on Lung Cancer (WCLC) is the world’s largest meeting dedicated solely to lung cancer and other thoracic malignancies. Every year the meeting attracts over 7,000 researchers, physicians and specialists from more than 100 countries.
A new era
“These oncogene-driven groups created by patients and caregivers are ushering in a new era for lung cancer research partnerships,” said Freeman-Daily. “By collaborating with researchers, clinicians, advocacy groups and industry, we are accelerating research into our own diseases.”
Genomic alterations drive more than 6o% of NSCLC. Approximately 20% of NSCLC cases have an oncogenic driver, such as EGFR (Epidermal Growth Factor Receptor), ALK (Anaplastic Lymphoma Kinase), ROS1 or BRAF, that physicians can either treat with approved, targeted drugs or with novel, investigational, therapeutics in 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 Facebook groups, 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. For example, ALK Positive focuses on ALK+ lung cancer and has more than 1,200 members from more than 40 countries. The group was created as a Facebook support group where NSCLC patients and caregivers with an ALK gene mutation/rearrangement can get support from like patients. NSCLC ALK Positive patients make up only about 5% of all lung cancer diagnoses each year.
ALK Positive partnered with LUNGevity Foundation to award three NSCLC grants totaling
U.S. $ 600,000 in May 2018.
Dedicated to help move exon 20-targeted drugs (focusing onEGFR and HER2 Exon 20 insertions) from early discovery into—and through—clinical trials to benefit patients the Exon 20 Group has 243 members in 22 countries. The Exon 20 Group accelerate discovery and approval of promising exon 20-targeted drugs, along with immunotherapeutic agents. The group also is also establishing best practices for the use of tissue and liquid biopsy in exon 20 patients.
The Exon 20 Group has partnered with International Cancer Advocacy Network to assist patients in identifying and enrolling in clinical trials and fund research.
The ROS1ders focus on ROS+ cancer of all types and has 323 members in 22 countries across eight cancer types.
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.
Other groups include EGFR Resisters focuses on EGFR+ NSCLC as well as cancers that develop resistance to EGFR- targeted therapies and has more than 650 members from 24 countries and the RET Renegades, which formed only a few months ago, has 43 members in two countries.
“It is an honor to work with this team of amazing lung cancer patients, advocates and scientists,” Noted Christine Lovly who works with the ROS1ders.
“Patient-partnered research is critical to build better treatments for and bring hope to all lung cancer patients,” she added.
The 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, 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,” explained Robert C. Doebele.
“For ROS1+ cancers, the ROS1 Cancer Model Project is essential for supporting ongoing research into the biology, testing and drug development for the disease.”
Last Editorial Review: September 23, 2018
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