When people think of the “fight against cancer,” they might imagine doctors counseling patients or white-coated researchers looking through a microscope.
Those conversations in the clinic and experiments in the lab, however, wouldn’t be possible without the critical information provided by cancer registries.
In the Commonwealth, the Kentucky Cancer Registry (KCR) has been dedicated to providing medical personnel with valuable cancer data for 30 years. The KCR is a real-time database that collects information about cancer diagnoses from across Kentucky, giving researchers and clinicians comprehensive data and patients faster access to relevant clinical trials.
KCR was selected in 2000 to join the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) program, a group considered to be among the most accurate and complete population-based cancer registries in the world.
Housed at the UK Markey Cancer Center, the registry is overseen by director Thomas Tucker, PhD, MPH, who also serves as associate director for cancer prevention and control at Markey.
Tucker has worked with the surveillance program since its inception, an era when cancer cases were mailed via paper forms and manually edited.
Today, using a sophisticated informatics method called Natural Language Processing, the KCR
receives pathology reports in real time from all of the pathology labs that see histologic material from Kentucky cancer patients.
Patients don’t have time to waste in pursuing their best option for treatment. That’s where the real-time pathology reports become especially important, says Eric Durbin, DrPH, MS, director of cancer informatics for the KCR.
“The registry is the eyes of our public health effort to control the cancer burden in the Commonwealth.” – Thomas Tucker, PhD, MPH
“For example, in late-stage lung cancer patients, median survival time is between eight and nine months,” Durbin said. “If you’re going to recruit those patients into a study, you have to get to them quickly. Using the electronic pathology reporting for patients seen at the University of Kentucky, we know about their cancer diagnosis almost at the same time as their physician. It gives us an opportunity to reach out to those patients and determine if they’re interested in enrolling in a clinical trial.”
In addition to providing data on cancer patients, the KCR also serves as a “virtual, population-based tissue repository.” By keeping track of electronic pathology reports for every cancer patient, the KCR is able to locate the tissue taken from patients at the time of their surgery or biopsy. These tissues can be invaluable for specific research projects.
Although tissue repositories exist across the country, the KCR is unique in that its data is truly population-based.
“It allows us to generalize the findings from individual studies to the underlying population, and that dramatically elevates the science,” Tucker said.
The registry has grown tremendously since its launch. In 1986, only about 60 percent of Kentucky hospitals were voluntarily reporting their cancer cases. In 1990, the Kentucky
General Assembly passed a law making the KCR the official population-based cancer surveillance program for the state and mandating reporting to the system.
The registry has played an important role in aiding researchers and clinicians throughout Kentucky, and Tucker says it will continue to be a major part of Markey’s efforts to reduce the burden of cancer in the state.
“If you can’t see where incidence is occurring, you can’t allocate resources to address the problem, and you won’t be able to see if your efforts to reduce the cancer burden are being effective,” Tucker said. “The registry is the eyes of our public health effort to control the cancer burden in the Commonwealth.”