Lung Cancer Alliance Launches First Open Access Patient Driven Website For Ct Scans And Clinical Data
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
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.