In one of our previous blogs, we told the story of how the University of Colorado research team is utilizing the internet, “Dr. Google,” to find patients for its clinical trials of the lung cancer drug, ponatinib. We now invite you to review that blog, as Part I of the story before continuing with this week’s blog.
At Florida Lung, Asthma and Sleep Study Specialist, we have been impressed with the way Ross Camidge, MD, PhD, director of the thoracic oncology clinical program at the CU Cancer Center, has called on “Dr. Google” for assistance.
Dr. Camidge and his team have built an “infrastructure to allow nationwide molecular prescreening for the trial.” Likewise the researchers plan to use internet awareness to speed accrual into their trial.
Dr. Ross Camidge stated, “Based on some really innovative work coming out of our own Specialized Program of Excellence in Lung Cancer, the tests we are employing in this trial seem to define a completely separate subtype of lung cancer — one that has really not been explored before. Now the challenge is in finding enough people whose cancers are positive for our biomarkers to prove whether the markers will predict for clinical benefit from ponatinib.”
The innovative style of using the internet to enroll patients in a clinical study was described by Dr. Camidge, “We know that the vast majority of the U.S. population now routinely uses the internet to find out about medical conditions, so we thought we’d get Dr. Google to help us out.”
Online Resources For Cancer Patients: Two You Might Not Know!
Camidge and his group were not the first to utilize internet awareness to facilitate patient education, research and trials. (In Part I of this story, we explained how this procedure operated by utilizing the Internet to find appropriate patients for the CU drug study.)
On the internet, FLASS is aware that lung cancer patients are discovering many high profile internet resources. For example, The Bonnie J. Addario Lung Cancer Foundation, whose stated mission is “educating patients, funding cutting-edge research, building strategic collaborations and raising public awareness, our goal is to transform lung cancer into a chronically managed disease within 10 years and ultimately to find a cure.”
It must be discouraging to patients to find that some organizations and foundations no longer speak of a cure, but only managing the symptoms of lung cancer. The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest “patient-driven philanthropies nationwide devoted exclusively to eradicating Lung Cancer.” If you or someone you love has been diagnosed with lung cancer, you might want to download their patient centered hand-book, “Navigating Lung Cancer,” at this valuable online resource.
Likewise, another group which helped Dr. Camidge and his team model their online studies and clinical trials was the Global Resource for Advancing Cancer Education (GRACE.) Again, you might find this a very knowledgeable resource for education about lung cancer, if you or your friends or family are finding yourselves living in the grip of this disease.
Dr. Camidge recently stated his gratitude to both of these organizations for helping him and his team design the online elements of ponatinib trial. He stated, “We are very grateful for their commitment to increase awareness about the opportunity it presents for lung cancer patients who might benefit from the molecular pre-screening.”
In 2012 Dr Jack West, the CEO of GRACE, co-wrote a paper with Camidge in the Journal of Thoracic Oncology in 2012 titled “Have Mutation, Will Travel.” In that paper the doctors both advocated a need to transform create new ways to conduct clinical trials “in the new era of molecular diversity.”
Growing Hope For Lung Cancer Patients: Small Studies and Large
Dr. West pointed out that small university settings could not have the major revenue that large pharmaceutical companies can spend funding drug trials, but the innovative use of the internet could change the future of how clinical trials are conducted. He said, “Regardless of whether the FGFR1-ponatinib pairing works or not, what the Colorado team is trying to do could really change the future of clinical cancer research for the better. Patients are increasingly becoming empowered about their own cancer care. Anything we at GRACE can do to get the word out about the Colorado approach will be a very good thing.”
Bonnie Addario, chair and founder of the BJALCF and a ten-year lung cancer survivor herself agreed, and stated, “If Dr. Camidge’s approach can bring a little bit of Colorado’s expertise into easy reach of anyone with a computer, then this is a new way of accelerating the process and much more convenient for the patient. We will do all we can to assist in getting patients involved in this exciting new approach.”
Crowd-Sourcing Comes To Medicine!
Dr. Camidge explained, “We’ve taken to the internet to crowd-source trial accrual through the Consano philanthropy website. It’s amazing — the internet is giving us new opportunities at every turn. I am very optimistic; although we have to do this on a very limited budget, I know from experience that we can produce major breakthroughs even from a small study if the approach is right.”
The doctors and staff of the Florida Lung, Asthma and Sleep Center Specialists thank you for reading this blog about the continuing saga of lung cancer research. We never give up hope, and we hope to inspire it in our patients every day. In the words of the Addario Foundation, we might be “just a breath away from a cure.”