Fred Hutchinson Cancer Research Center’s award-winning Cancer Surveillance System database, or CSS, which folds into the larger national cancer registry, the Surveillance, Epidemiology and End Results Program, or SEER, has received a contract renewal of up to 10 years from the National Cancer Institute.
The cost-sharing contract, which will be used for core infrastructure support of the CSS, could total more than $64 million if the NCI exercises all contract options. The federal government would fund more than $51 million with Fred Hutch contributing nearly $13 million.
The Hutch’s CSS registry, helmed by Drs. Steve Schwartz and Christopher Li of the Public Health Sciences Division, has been a mainstay of epidemiological research since its inception in 1974 (the SEER Registry was established a year earlier). It’s also been ranked the nation’s No. 1 participating cancer registry since 2006, thanks largely to what its principal investigators call an “incredibly dedicated staff,” led by Mary Potts, longtime director of Information Services.
“SEER is the most well-respected cancer registry program in the world and is the gold standard of cancer registries out there,” Li said. “To be a part of the program is obviously important in terms of the major contributions that our data has for overall cancer surveillance in the U.S. By contributing data for another 10 years, we’ll be able to look at longitudinal trends in our regions and other regions of the country.”
The SEER registry currently monitors cancer incidence and survival in approximately 28 percent of the U.S. population. But that is changing, he said. SEER is expanding the number of registries in order to cover 34 percent of the nation. It’s also increasing the diversity of the population it covers.
“There are four new states being added — New York, Massachusetts, Wisconsin and Idaho,” he said. “And those states will bring a whole new set of demographics to the registries.”
While CSS, which collects population-based data on cancer incidence and survival in 13 counties in western Washington, will not be expanding its coverage area, Li said there are changes afoot.
“There’s a lot of interest in trying to capture data on recurrence among cancer survivors,” he said. “It’s a difficult problem to solve just because there isn’t an easy way to do it. We collect recurrence data in some of our smaller research studies but it requires a dedicated staff to retrieve medical records and it takes a lot of time and costs a fair amount of money. We’re currently exploring different ways to leverage electronic data to identify recurrence, looking at multiple ways of doing this through claims, electronic health records, and pathology reports.”
One current SEER-funded effort, led by the Hutch’s Dr. Ruth Etzioni, will use insurance claims, electronic health records and patient-reported outcomes to gather metastatic recurrence data on breast cancer patients. Once verified, Etzioni’s team will use their work to develop an algorithm that can predict recurrence.
Li said gathering these data is crucial for a number of reasons.
“I mostly focus on breast cancer where we have a growing population of survivors — over 3 million women,” he said. “One of the main outcomes is the development of a cancer recurrence, which can lead to additional toxic treatments and potentially death. So it’s important that we can characterize the risk of recurrence, develop approaches to identify it early, and prevent it through treatment and follow-up strategies. But we need to be able to rely on that endpoint to conduct meaningful work in this space.”
Li said it would be impossible to estimate how many times the data from the 13-county CSS or the SEER registries have been used by scientists, but that it was quite substantial.
“The data have probably led to hundreds of publications a year,” he said. “That’s what makes the SEER program so powerful — having data from all the registries contribute.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com. Just diagnosed and need information and resources? Check out our patient treatment and support page.