Washington, DC [June 7, 2010]– 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.
FentonAmbrose 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.”
The results of that successful pilot run are being released today to mark the official launch of the Give a Scan program which can be viewed at www.giveascan.org.
Fenton-Ambrose thanked Kitware, Inc. for its assistance in developing the program and in setting up the website, which will be available without charge to researchers around the world.
In addition to Dr. Sullivan, Mr. Avila, Senior Director of Healthcare Solutions at Kitware and a leading expert on the computational analysis of medical images, is also a member of the new Give a Scan Advisory Board.
Other board members are Jane Reese-Coulbourne, LCA Board Chair and consultant to the Food and Drug Administration’s Critical Path Initiative and the Reagan-Udall Foundation; David Yankelevitz, MD, a world-renown radiologist and one of the initiators of the International Early Lung Cancer Action program; and Gail Matthews, a lung cancer survivor, LCA advocate and life long active volunteer who has championed many social causes.
Lung Cancer Alliance, www.lungcanceralliance.org, is the only national non-profit organization dedicated exclusively to patient support and advocacy for those living with or at risk for lung cancer. Lung Cancer Alliance is committed to leading the movement to reverse decades of stigma and neglect by empowering those with or at risk for the disease, elevating awareness and changing health policy.
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