Twenty lung cancer advocacy organizations will be collaborating with the Lung Cancer Research Foundation (LCRF) and 23andMe Holding Co. to conduct the Lung Cancer Genetics Study, according to an announcement from LCRF.
The Lung Cancer Genetics Study aims to expand knowledge on the genetics of people with lung cancer to improve detection and care and help reduce the risk of lung cancer. The study objective is to build a “comprehensive, open-source database of heritable genetics and patient-reported data in lung cancer,” officials said in the announcement.
“It is powerful to see the entire lung cancer community unite behind the Lung Cancer Genetics Study,” Aubrey Rhodes, LCRF executive director, said in a statement. “Understanding genetic factors associated with lung cancer, and enabling researchers worldwide to securely access the data, will go a long way to improving early detection and treatment outcomes. LCRF is proud to be a part of what will certainly be an important initiative for lung cancer research.”
The goal of the study is to recruit 10,000 people with lung cancer, organizers said. There are no restrictions on the type of lung cancer, the stage of disease, a person’s gender, smoking status, biomarker, or other variables. The Lung Cancer Genetics Study is recruiting individuals who are 18 years of age or older, live in the United States, and have been diagnosed with lung cancer.
The study organizers will make deidentified data from the study available to approved researchers, and access to the scientific database will be available to nonprofit researchers and institutions at no cost. Participants in the study can receive the 23andMe kits at no cost.
The 23andMe research platform “will enable consenting participants to come together to provide critical data for scientists studying lung cancer,” organizers said, explaining that “research data will include genetic information and self-reported information about each participant’s unique experiences (using responses from online surveys), as well as additional data sources such as medical records and tumor biomarker information.”
The CEO of 23andMe shared what it means to participate in the project and why it’s critical to conduct the research and enable patients to participate from home.
“Through the launch of the Lung Cancer Genetics Study, we hope to fill an unmet need for a comprehensive database that bridges the gap between genetic, clinical, and patient-reported data,” said Anne Wojcicki, co-founder and CEO of 23andMe, in a statement. “Because lung cancer affects people from all communities, it’s important for this research to truly reflect the diversity of those impacted by the disease. This collaborative effort unites survivors, caregivers, researchers, and advocates who are all dedicated to improving the treatment and care of lung cancer.”
The study collaborators include ALK Positive, Biomarker Collaborative, BRAF Bombers, EGFR Resisters, Exon 20 Group, Free ME from Lung Cancer, GO2 for Lung Cancer, The Happy Lungs Project, International Cancer Advocacy Network, KRAS Kickers, Lung Cancer Foundation of America, Lung Cancer Research Foundation, LUNGevity Foundation, MET Crusaders, NTRKers, Oncogene Cancer Research, PDL1 Amplifieds, RET Positive, RET Renegades, The ROS1ders, and Troper Wojcicki Philanthropies.
LUNGevity Foundation leadership shared what it means to the organization to participate in the project.
“LUNGevity Foundation is excited to partner on this community-driven project,” said Upal Basu Roy, vice president of research at LUNGevity Foundation, in a statement. “As a researcher and a patient advocate, I’m most excited about how the data collected in this study could be leveraged to help patients in the future. For example, it could help researchers identify new drug targets and mechanisms for drug development or find ways to address side effects proactively.”
A patient advocate from the EGFR Resisters also weighed in on what it means to collaborate on the project and why it’s critical to conduct the study.
“Studying the genetics of lung cancer can help us understand risks, improve early detection, and develop better treatments. This collaborative effort unites patients, advocates, doctors, and researchers,” said Jill Feldman, co-founder of the EGFR Resisters. “By making the data securely accessible to researchers worldwide, the Lung Cancer Genetics Study increases our chances of breakthroughs that can save lives.”
Organizers emphasized that it is important to conduct the collaborative study because lung cancer “remains a critical area of unmet need,” explaining that, despite advances in treatment:
- Lung cancer took more lives in the United States in 2020 than breast, colorectal, and prostate cancers combined.
- One in 16 people in the United States will be diagnosed with lung cancer in their lifetime.
- In 2024, an estimated 234,000 new people will be diagnosed with lung cancer in the United States.
- While lung cancer accounts for 12% of all new cancer diagnoses, it accounts for 20% of cancer deaths.
- Despite being the deadliest cancer, lung cancer research is underfunded compared with other cancer types.
- Early detection through screening can dramatically improve the long-term survival rate. Only 25% of all people diagnosed with lung cancer will survive 5 years or more, but for those whose cancer was diagnosed through annual screening by computed tomography scan, the 20-year survival rate is 81%.
- In people diagnosed at 55 years of age or younger, lung cancer is more common in women than men.
- Among those with lung cancer who have never smoked, approximately two-thirds are women, making women who have not smoked more than twice as likely to develop lung cancer as men who have not smoked.
The Lung Cancer Genetics Study is made possible by support from Troper Wojcicki Philanthropies. For more information on the study, visit the Lung Cancer Genetics Study landing page.
Source: PR Newswire
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