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Future Directions for NCI’s Surveillance Research Program

April 17, 2015, by NCI Staff

Cancer surveillance science involves understanding and reporting the most relevant and available patient information to provide a complete picture of a patient’s cancer.

On April 15, NCI’s Surveillance, Epidemiology, and End Results (SEER) Program published the latest data on U.S. cancer incidence. Since the early 1970s, SEER has been an invaluable resource for statistics on cancer in the United States, tracking and reporting trends in new cases of cancer as well as cancer deaths. Researchers at NCI and around the country have relied on SEER for the most accurate statistics day in and day out.

For the past several years, though, SEER researchers have been working toward a much broader and comprehensive goal for providing cancer statistics on a nationwide basis.

A major advance in reporting methods for surveillance developed in recent years is SEER’s real-time electronic capture of approximately 80 percent of pathology reports for patients diagnosed with cancer in the United States. Real-time reporting has implications for research applications of the registry data, including clinical trial accrual and acquiring tissue specimens to support precision medicine-related research.

During a recent talk at NCI, Lynne Penberthy, M.D., M.P.H., associate director of the Surveillance Research Program in NCI’s Division of Cancer Control and Population Sciences, highlighted the importance of these E-path reports, as they’re informally called. The reports, she said, offer the potential for comprehensive data on biomarkers and specimen resources, such as tissue, from cancer patients.

Such data on biomarkers, which can better characterize each person’s cancer and may provide critical information on response to certain drugs, have not previously been available on a nationwide basis. Having this information so readily accessible should revolutionize how cancer cases are tracked and reported, Dr. Penberthy said, ultimately enabling more informed decision making, not only about treatment and survivorship, but also about ways to control costs of cancer care.

SEER has expanded its population-based registries over the past four decades so that the registries now cover 28 percent of the U.S. population and receive new reports on more than 400,000 cases of cancer annually. For survival statistics, SEER is able to track millions of patients on an ongoing basis to provide the most comprehensive information possible.

Additionally, as of this decade, SEER has been able to collect data on key demographics, tumor characteristics, and the initial course of therapy once a cancer is diagnosed, as well as on measures that have been tracked for decades, such as stage at diagnosis and 5-year survival rates.

The inclusion of these new data in SEER is just the beginning. Dr. Penberthy has been tasked with developing a new strategic vision for SEER.

“I believe that enhancing SEER as a national resource to better support cancer research and provide more clinically relevant information to understand cancer trends and outcomes is an imperative,” she said. “We’re currently in the process of looking at a variety of mechanisms to accomplish that goal.”

But the SEER Program faces some challenges as it tries to include more clinically relevant data, she continued. Not only are courses of treatment lengthier—including the use of adjuvant therapies to reduce the chance of recurrence—but many treatment protocols now include oral drugs, which are more challenging to track than conventional forms of chemotherapy because they usually are taken by patients at home and are obtained at the pharmacy rather than in a hospital or physician practice setting. Recurrence, metastases, and disease progression are also aspects of cancer that are sometimes difficult to track, and quality of life is a crucial measure that has been historically under-reported.

In addition to expanding tracking of clinical aspects of cancer, auto-processing of data that routinely come to NCI is at the top of the SEER to-do list. One tool in development is the SEER-linked Virtual Bio-Repository, which will provide an opportunity to acquire data that are not routinely included in current datasets. Some of the more important data types are the status of specific biomarkers, such as mutations in genes like EGFR and ALK, which can be targeted by FDA-approved therapies, and whether patients have metastatic disease or had biopsies of recurrent tumors, which can indicate the likelihood of long-term survival.

A number of research projects using newly available SEER data about clinically relevant characteristics of cancers are in the works, Dr. Penberthy said. Some examples include tracking breast cancer molecular subtypes (as was reported in detail in the most recent Annual Report to the Nation) and investigating the factors responsible for the increased incidence of pancreatic and kidney cancers seen since the late 1990s and 2000s.

In addition, researchers are using SEER data to analyze the results of tumor DNA tests such as the Oncotype DX, a multigene test that can guide treatment decisions for women with early-stage breast cancer. Incorporating data from the results of similar tests will greatly enhance SEER’s utility for researchers, Dr. Penberthy said.

“Having knowledge of the genetic makeup, the risk of progression or recurrence, and many other factors is revolutionizing cancer treatment, and having the ability to track these factors for the entire country is decidedly our mission going forward,” she continued. “Findings from tests such as Oncotype DX are just one example of how cancer research is changing and how we as surveillance scientists need to be in the vanguard tracking those changes.”

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