Enhancements to NCI’s SEER Program
Creating New Research Opportunities
Since its launch 45 years ago, NCI’s Surveillance, Epidemiology, and End Results (SEER) Program has been the nation’s premier source for clinically relevant patient data at the population level—data that the research community, as well as patients, want and need to better understand cancer and its impact. One of NCI’s most important partnerships with the Centers for Disease Control and Prevention, the SEER Program is the most comprehensive population-based cancer registry in the world and is an invaluable resource for conducting population-based observational studies, as well as clinical and even basic research.
In FY18, after a lengthy and complex re-competition process, DCCPS awarded contracts to the SEER Program registries. The new Program includes 16 registries covering 34% of the population and 19 different geographic areas, and is valued at more than $40 million per year. Also in recent years, DCCPS and SEER leadership have been working with many groups and experts to better understand the cancer research community’s needs and the opportunities that could be created through strategic, targeted enhancements to SEER.
In those discussions and forums, the main data needs that were identified included those that cover
- All treatments received by individual patients from diagnosis until their death;
- Outcomes other than incidence and mortality—in particular, recurrences; and
- The genomic composition of patients’ tumors.
As might be expected, enabling SEER to collect such data, and ensuring that they are accurate, is an extremely complex undertaking. It’s because of that great complexity that NCI is moving forward with these enhancements in a thoughtful and systematic way—one that we believe will lay the foundation for successfully integrating them into the broader SEER Program.
Among the most important enhancements to the SEER Program is the expansion of the size and diversity of the population it covers. With the expansion in FY18, SEER is now collecting data on approximately 550,000 new individual cancer cases each year. This expansion was implemented with a strategic focus: adding US cancer registries that include more underserved and ethnic/racial minorities, in order to capture cancer data that more fully represent the US population.
Unfortunately, we can’t immediately start collecting every type of data we’d like SEER-wide. Therefore, the Program has also launched a series of pilot studies that can help us better understand the barriers and challenges to collecting these new types of data.
For example, as mentioned previously, NCI is partnering with Department of Energy (DOE) scientists, using funding provided through the Cancer Moonshot, to develop tools that will allow SEER to collect the data elements it has traditionally captured (e.g., cancer type and grade), as well as new data elements (e.g., biomarkers, recurrences), from patient medical records. Compared with the manual collection that is often used now, automated data collection would be far more reliable and rapid, even if some cases still require manual coding. Another SEER pilot study is focusing on collecting data on the use of oral cancer drugs and adherence to prescribed regimens by linking registry data with pharmacy data. Similar pilot efforts are creating linkages between SEER registries and health insurance claims data from some of the largest health insurance companies in the country. Other pilot linkage efforts under way involve collecting data on the results of genomic tests. As oncology continues on the road to precision medicine, the ability to systematically collect these data would go a long way toward informing this movement.
While these linkage pilots are noteworthy, another exciting enhancement to SEER under active evaluation is on the other end of the research spectrum: the development of a “virtual biorepository.” The aim of this repository is to provide information on tumor samples stored at institutions across the country. This will allow investigators to search for samples from patients with certain demographic or clinical characteristics or certain outcomes, and then request those samples (including all related clinical data on that patient) via an honest broker for use in their research.
Over the coming decade, stay tuned to hear more about a remarkable array of new scientific opportunities. As always, DCCPS welcomes ideas and feedback from the cancer community about ways to strengthen the utility and usability of SEER data for both cancer research and cancer control planning.
Adapted from NCI’s Cancer Currents Blog, August 23, 2018.