The Bonnie J. Addario Lung Cancer Foundation and the American Lung Association’s LUNG FORCE welcome the International Association for the Study of Lung Cancer as a new member of the Lung Cancer Patient Registry, a place to gather and store detailed patient information, providing a real-world view of patient outcomes and treatment effectiveness. Patients with lung cancer enter information anonymously into the Lung Cancer Patient Registry and that information is made available to patients, their families, health-care providers, and researchers.
Fred R. Hirsch, MD, PhD
The Lung Cancer Patient Registry includes the ability for registered researchers to query de-identified data in any combination of data elements using the research portal online search tool. Researchers interested in submitting proposals for placing clinical trials within the Lung Cancer Patient Registry may now submit a proposal.
“Anytime patients and doctors can collaborate more effectively, we improve the experience for both,” said Fred R. Hirsch, MD, PhD, Chief Executive Officer of the International Association for the Study of Lung Cancer. “As a global, multidisciplinary organization with a mission to conquer lung cancer, we look forward to the collaboration and the impact of the Lung Cancer Registry and are thrilled to join the partnership.”
In January 2018, the Lung Cancer Patient Registry launched a study on the side effects of immunotherapy on patients with non–small cell lung cancer (NSCLC) using data provided by patient participants. There is increasing awareness of the importance of collecting patient-reported outcomes in oncology, especially long-term survivors, whose toxicity generally may not reported in clinical trials. The findings will help educate other patients with NSCLC and their families about the side effects that are likely to occur and how they will affect the patients’ quality of life.
Patients with any form or stage of lung cancer can join the Lung Cancer Patient Registry at www.lungcancerregistry.org. Patients can opt in to contribute their information, set their contact preferences, as well as compare their lung cancer experience with others in the registry. Patients can choose to receive information about research opportunities or other relevant news as part of their participation. ■