I wonder if any of you have heard of the Lung Cancer Registry? lungcancerregistry.org/ The Registry is a joint effort of the Bonnie J Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA), and the International Association for the Study of Lung Cancer (IASLC). Its purpose is to help researchers better understand our disease and help them develop better treatments.
There are two surveys available for lung cancer patients or their caregivers to complete. One is about lung cancer in general and the other is about immunotherapy and side effects you may have experienced. The surveys are a tool for patients to tell the medical field (including doctors, researchers, and scientists) who we are (in general), what kinds of treatments and side effects we have had, whether or not we have received any supportive care. The immunotherapy survey looks specifically at which drugs you may have been given, the results, and what side effects you have had from the treatments.
It is really important for all of us to complete the surveys. The idea behind them is to provide enough information that doctors and researchers will better understand what we patients face. As more and more of us complete the surveys, patterns will begin to form that will allow better understanding, diagnostics and, in the end, better outcomes for patients with lung cancer.
If you have any questions about the Registry, please let me know! I am passionate about getting the word out about it and encouraging all of my fellow lung cancer survivors to complete the surveys. They're pretty fast to complete - I bet you could complete them in 15 minutes or so. I truly believe the information, if we can get enough participants, will be invaluable.
I'm a data nerd so there is another benefit to completing the surveys. Once you do, you can compare your own experiences with those of others in the Registry.
Full Disclosure: I am a nonvoting member of the Registry’s advisory board. We are trying to get the word out about the Registry. Do any of you have ideas for how we could best do that? Every suggestion and opinion is appreciated!