The SEER Program’s evolution: supporting clinically meaningful population-level research

Abstract Although the Surveillance, Epidemiology, and End Results (SEER) Program has maintained high standards of quality and completeness, the traditional data captured through population-based cancer surveillance are no longer sufficient to understand the impact of cancer and its outcomes. Therefore, in recent years, the SEER Program has expanded the population it covers and enhanced the types of data that are being collected. Traditionally, surveillance systems collected data characterizing the patient and their cancer at the time of diagnosis, as well as limited information on the initial course of therapy. SEER performs active follow-up on cancer patients from diagnosis until death, ascertaining critical information on mortality and survival over time. With the growth of precision oncology and rapid development and dissemination of new diagnostics and treatments, the limited data that registries have traditionally captured around the time of diagnosis—although useful for characterizing the cancer—are insufficient for understanding why similar patients may have different outcomes. The molecular composition of the tumor and genetic factors such as BRCA status affect the patient’s treatment response and outcomes. Capturing and stratifying by these critical risk factors are essential if we are to understand differences in outcomes among patients who may be demographically similar, have the same cancer, be diagnosed at the same stage, and receive the same treatment. In addition to the tumor characteristics, it is essential to understand all the therapies that a patient receives over time, not only for the initial treatment period but also if the cancer recurs or progresses. Capturing this subsequent therapy is critical not only for research but also to help patients understand their risk at the time of therapeutic decision making. This article serves as an introduction and foundation for a JNCI Monograph with specific articles focusing on innovative new methods and processes implemented or under development for the SEER Program. The following sections describe the need to evaluate the SEER Program and provide a summary or introduction of those key enhancements that have been or are in the process of being implemented for SEER.