Gaining a Voice By Participating In A Survey On Lung Cancer

How does lung cancer affect your quality of life?

In a series of surveys, people affected by the disease will have a chance to describe how symptoms and side effects affect them, both now and over time. The surveys are a part of the Lung Cancer Registry, a project initiated by the GO2 Foundation for Lung Cancer, a nonprofit patient advocacy organization.

The Lung Cancer Registry is a community for people with all forms of lung cancer. Powered by data from patients and caregivers, the platform aims to give those most affected by lung cancer a voice. Registered patients, caregivers, clinicians and researchers can access the information, from which identifying details have been withheld.

Patients have the opportunity to compare their experiences and cancer characteristics with those of others affected by the disease. Those who join also can ask to be sent information about potentially relevant clinical trials and educational materials about their specific type of lung cancer.

A variety of innovative lung cancer treatments are available, including targeted drugs and immunotherapies, newer surgery and radiation techniques, and diagnostic technologies that can personalize therapy. The new surveys will track not only patients’ drugs and treatments but also the sequence in which they are received.

Using validated research tools, the surveys will track symptoms and side effects and assess health-related quality of life. This will give researchers a more complete view of the journeys of individual patients over time, and registry leaders expect that greater understanding will lead to more studies that compare treatment options, evaluate the issues most important to patients during therapy and consider the survivorship experience.

“Lung cancer is the leading cancer killer of men and women in every ethnic group,” said Laurie Fenton Ambrose, co-founder, president and CEO of the 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.”

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

Any patient or caregiver can learn more or sign up to participate at lungcancerregistry.org. Participating patients will be asked to complete the new surveys when they join and then again quarterly and annually.

The GO2 Foundation (go2foun- dation.org) is dedicated to saving, extending and improving the lives of patients with lung cancer and those at risk of developing the disease. The foundation works to change the experience of living with lung cancer by ending the associated stigma, increasing public and private research funding, and ensuring access to care.

Since its founding in 2016, the Lung Cancer Registry has 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.