Lung Cancer Patient Registry Using Big Data to Search for a Cure
Education & Research There is a new worldwide registry for lung cancer patients to store their medical information, in hopes that the data gathered through the registry can lead to impactful research.
Janet Freeman-Daily is a six-year, non-small cell lung cancer survivor, “kept alive,” as she says, by clinical trials.
“Patient registries help patients as well as researchers,” Freeman-Daily explains. “I feel good knowing that my donated data may lead researchers to identify better lung cancer treatments. I also appreciate being able to see how other patients with my type of cancer are responding to treatments, and having the option in the future to be notified of clinical trials for which I qualify.”
Patients as researchers
Patients participating in the Lung Cancer Registry can help researchers better understand the disease and develop better treatments. In turn, because it is an open platform, patients can do their own research, and find information about others’ treatment plans and what does and does not work with similar cancer types.
“With more than 1.8 million people worldwide diagnosed with lung cancer each year, there is a dire need to improve patient outcomes and quality of life,” says Bonnie J. Addario, a 12-year lung cancer survivor, and founder of her own Lung Cancer Foundation. “The more people who register, the more data there is to study. Researchers can see those patterns, which could lead to more effective treatments and better outcomes.”
'“Lung cancer has been wrongly singled out as the only disease related to smoking. There are many others...'”
How to get involved
When there are clinical trials or research specific to the type of lung cancer users have, they can opt in to participate in studies.
“This information provides critical data to identify new trends, recognize the most important treatments, develop new clinical trials and care practice guidelines” adds Costanzo DiPerna, M.D., medical director and thoracic surgeon at Dignity Health Cancer Institute. “We need patients to opt in, because we need their information."
Relationship to cigarettes
Lung cancer kills more people each year than the next three most frequent cancers combined.
About two-thirds of lung cancer diagnoses are in non-smokers and former smokers.
“With the onset of new targeted therapies, comprehensive genomic profiling and now immunotherapy, we can finally see the light at the end of the tunnel,” Addario declares. “But in order to really make progress, we simply must increase the funding for this disease and say goodbye to the stigma that it’s a smoker’s disease.
“Lung cancer has been wrongly singled out as the only disease related to smoking. There are many others, including heart and vascular disease, as well as many other cancers.”