Lung Cancer Registry Launches New Surveys

SAN CARLOS, Calif. and WASHINGTON DC (December 12, 2019) — The Lung Cancer Registry has launched new surveys to do an even better job of capturing important moments in a patient’s lung cancer journey. These new surveys include questions about how symptoms and side effect impact quality of life — now and over time.

With many innovative treatments available for lung cancer, the new survey modules will now track not only the drugs and treatments that patients received but also the sequence in which they were received. At the same time, the surveys will track patients’ symptoms and side effects and assess health-related quality of life using previously validated research tools. The Lung Cancer Registry will now provide researchers a more complete view of the journey of patient with lung cancer over time. This will help promote more studies comparing different treatment options, understanding issues that are most important to patients during treatment, and learning about lung cancer survivorship.

“Lung cancer is the leading cancer killer of men and women in every ethnic group,” said Laurie Fenton Ambrose, co-founder, president and CEO, GO2 Foundation for Lung Cancer. “Our Lung Cancer Registry offers an opportunity for patients to share their own data and to use the registry data to gain insights into their treatment path and treatment options.”

“This data will help researchers identify new patterns, thereby helping to inform new clinical trials and improve patient care and patient outcomes,” said Sandra Shaw, director, Lung Cancer Registry. “We encourage all patients with lung cancer to sign up, share their story, and power lung cancer research.”

Patients who sign up for the Lung Cancer Registry will be asked to complete these new surveys when they join and then again quarterly and annually. Any patient or caregiver can learn more or sign up to participate at lungcancerregistry.org.

About the Lung Cancer Registry

The Lung Cancer Registry is a community for people with all forms of lung cancer. Powered by data from patients and caregivers, this platform gives those most affected by lung cancer a voice. Registered patients, caregivers, clinicians, and researchers can access the de-identified information.

The Lung Cancer Registry was founded in 2016 by GO2 Foundation for Lung Cancer. The Registry joined forces with the American Lung Association and the International Association for the Study of Lung Cancer to expand the effort to advance research for the world's deadliest cancer.