Lung Cancer Alliance (LCA), the only national non-profit dedicated to providing support and advocacy for those living with or at risk for lung cancer, announced today the launching of the first open access website for CT scans and clinical data donated by patients, called Give a Scan, that will increase and accelerate research for lung cancer screening, diagnosis, treatment and drug development.
LCA President & CEO Laurie Fenton Ambrose called the new website a "landmark event in a patient-powered war on lung cancer."
Under the Give a Scan program, patients can donate their scans and other clinical information to LCA, which will de-identify the scans and upload the data to the new Give a Scan website where they can be accessed without charge by researchers around the world.
"The patients themselves are going to drive the change that will bring more researchers and more resources to the epidemic of lung cancer that most people do not even realize is the leading cancer killer," Fenton Ambrose said.
The War on Cancer, the popular description of the National Cancer Act passed by Congress forty years ago, has had little impact on lung cancer mortality. The 5-year survival rate in the 1970's was 13% and is still only 15% today. Lung cancer, the leading cancer killer, takes more lives each year than the next four biggest cancers - colon, breast, prostate and pancreatic cancers - combined.
Fenton-Ambrose said there are two main reasons why so little progress has been made.
"First is the historic underfunding of lung cancer research and the lack of a comprehensive approach - tragic health policy mistakes that will gradually change as more patients and their families and caregivers come together and publicly speak out."
"The second is the lack of raw material - not only tissue, blood and sputum samples, which are now starting to be made available, but scans coupled with clinical data - are urgently needed for research," she said.
"Imaging is critical in the diagnosis, treatment and follow-up of lung cancer patients, and imaging holds enormous potential for speeding the development of targeted drugs and monitoring the effect of personalized treatments," said Daniel C. Sullivan MD, Professor of Radiology at Duke University Medical Center and Director of the Imaging Core, and Science Adviser to the Radiological Society of North America (RSNA).
"But greater and more reliable accuracy in measuring small changes in tumor volumes must be achieved in order for that potential to be fully realized," he noted.
Dr. Sullivan is a member of the Give a Scan Advisory Board, which was also announced today.
Research to achieve those goals has been hampered by the lack of access to patients' scans with enough clinical data to make headway possible and despite efforts over the years to make this combination of data publicly available.
"This had not been done before so we were breaking new ground," Fenton Ambrose said.
"Patients responded immediately to donate their scans and data," she continued. "Gradually we developed the infrastructure and legal documents needed for the program, while Rick Avila of Kitware, Inc. donated countless hours to work on the new website and how to index and display the data."
Muvalaplin shows promise in lowering Lp(a) levels in clinical trial