Cancer Surveillance Programs and Data Tracking
Scientists and health experts collect and study information about how many people get cancer, how serious it is at the time of diagnosis, how it’s found and treated, and how many people survive. The overall process of tracking cancer data is called cancer surveillance.
Since 2001, cancer surveillance programs have provided valuable information on more than 36 million cancer cases. You may hear them referred to as cancer registries or tumor registries. Learn what data is tracked, why and how it’s tracked, and how the information is used.
What types of cancer data are tracked?
Cancer registries provide data for:
- Cancer incidence (new cancer cases)
- Cancer mortality (deaths due to cancer)
In the United States, cancer registries collect detailed information about every cancer diagnosed, including:
- Date of diagnosis
- Primary site of the tumor (cancer type and location)
- Stage of the cancer (how advanced the cancer is at diagnosis)
- Results of tumor cell testing (cancer cell type and how the cell behaves)
- First course of treatment (treatments used to initially treat the cancer)
- Patient demographics (age, sex, race, ethnicity, county of residence)
- Patient’s basic outcome (survival status, last date of contact, cause of death if applicable)
The reported cancer data does NOT include:
- Personal reports from patients
- Detailed info on all treatment side effects
- How well they cope with cancer during and after treatment
Why is cancer data tracked?
The main goal of collecting cancer data is to help improve patient outcomes. The data collected helps researchers, doctors, and other cancer experts to:
- Understand cancer trends
- Guide cancer research
- Develop better cancer-related guidelines and standards
Cancer surveillance helps save lives by identifying problems, guiding action, and measuring progress in cancer care. It's a cycle of data → action → better outcomes.
Who is responsible for tracking cancer data?
In the United States, state laws require health systems and health care providers to report cancer data. They are held to specific standards to ensure the data is complete, consistent, accurate, and timely.
How is cancer data tracked?
Tracking cancer data involves:
- Identifying people with cancer (casefinding)
- Collecting information in local, hospital, or state cancer registries
- Submitting data to national cancer surveillance programs
- Combining data into large databases used for research, planning, and policy
Casefinding is the first step in cancer data tracking. It involves identifying people diagnosed with cancer who have received care at hospitals or other health systems. Usually, a doctor starts recording this data in their patient’s electronic health record (EHR).
The United States does not have a single nationwide cancer registry. Instead, the data is first collected and sent to one or more hospital-based or population-based cancer registry.
The data collected and where it’s sent depends on state laws and the purpose of the registry:
- Hospital and health system registries are often part of a facility’s cancer program. They collect data as part of patient care and may focus on things like treatment and provider education. Some hospitals share data to study patterns of care among different doctors, groups of people, or geographic areas.
- Population-based registries are usually tied to regional or state health departments. They collect information on all new cancer cases diagnosed within a certain area, regardless of where the person was treated.
Eventually, facility, state, and regional programs send required data to one or both major national cancer surveillance programs:
- The National Program of Cancer Registries (NPCR) is run by the Centers for Disease Control and Prevention (CDC). It supports the data collected by population-based registries in each state. This program’s purpose is to collect data on larger percentages of state populations.
- The Surveillance, Epidemiology, and End Results (SEER) program is run by the National Cancer Institute (NCI). The NCI contracts with non-profit organizations to collect data on new cancer diagnoses in certain geographic locations representing 48% of the US population. The data is analyzed and published annually in the .
After cancer data is collected and managed by national surveillance programs, it is organized and shared through large databases that help researchers, policymakers, and hospitals understand cancer trends and improve care.
- The U.S. Cancer Statistics (USCS) combines cancer data reported to the CDC’s NPCR and NCI’s SEER programs. Together, the data is inclusive of the entire US population. The data is used to publish reports on:
- Cancer incidence: How often cancer occurs
- Survival rates: 5-year, relative survival, etc.
- Mortality trends: Cancer-specific death rates
- Stage at diagnosis: For example, how many people are diagnosed at early vs. late stages
- Demographic patterns: Differences by age, race, sex, or region, etc.
- The National Cancer Database (NCDB) is a clinical oncology database run by the American College of Surgeons Commission on Cancer. It includes data from hospital and health system cancer registries. NCDB data includes about 70%-75% of cancer cases, so it’s not as comprehensive as USCS. The data from NCDB is used by health systems themselves for quality improvement. Nationwide organizations that set standards of care and develop guidelines for treatment and care also use NCDB data. For example, the NCDB data is used to:
- Evaluate ways hospitals and other treatment centers manage patient care and treatment options
- Compare cancer care and patient outcomes among hospitals and treatment centers
- Set standards and improve guidelines for cancer care
Quality of reported cancer data
The quality of cancer registry data is kept high through strict standards, checks, and regular reviews. All local, regional, and state cancer registries that send data to USCS NCDB are required to use set rules and codes for cancer types and staging. This is to make sure data is consistent nationwide.
The programs use quality checks to be sure each reported cancer case includes the right information. If any information is missing, the health system or provider may be asked to supply it. Incomplete cases may not be usable in certain reports or studies and could affect survival data and trends that rely on complete data.
How is personal information kept private?
The information reported to cancer data registries includes personal health information. However, the detailed data is secured and cannot be accessed by the public. Before any cancer statistics or other findings from the registries are made public in any way, the law requires it to be de-identified. This means details identifying individual patients are removed and nothing can be traced back to any one person.
How are cancer data and databases used?
Researchers, health professionals, and other experts use cancer data to look at patterns and trends for specific cancers and in groups of people. For example, the statistics collected can help:
- Evaluate if screening and other prevention measures are making a difference. For example, the data helps guide the development and updating of guidelines for cancer prevention and early detection.
- Show cancer rates in certain types of jobs, such as those that may lead to exposure to chemicals and substances known to cause cancer.
- Determine whether certain cancers are becoming more or less common. For example, a change in the number of new cancer cases or cancer deaths may lead researchers to further study how specific types of cancer develop, grow, and spread.
- Show how survival rates are improving over time. For example, scientists can see how often a certain cancer is diagnosed at an early stage versus a more advanced stage. They can look at this data by cancer or by demographics, such as certain places people live and the age they are when diagnosed. This allows them to dig deeper into the data to improve screening and preventive care.
- Understand why some groups of people or communities are more affected by certain cancers. For example, the data can show differences in cancer rates among different racial and ethnic groups and in certain states or regions.
How do I find cancer statistics?
Cancer statistics are available to everyone through public databases. Because the data is de-identified, it doesn’t include personal information. Here are some ways the public can access (or request to access) cancer data and statistics:
- American Cancer Society (大象tv):
- National Cancer Institute (NCI):
- Center for Disease Control & Prevention (CDC):
- American College of Surgeons (ACoS) Commission on Cancer (CoC):
- Written by
- References
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as editors and translators with extensive experience in medical writing.
American College of Surgeons (ACoS). Cancer Programs. Accessed at https://www.facs.org/quality-programs/cancer-programs/ on July 2, 2025.
Centers for Disease Control and Prevention. National Program of Cancer Registries (NPCR). Accessed at https://www.cdc.gov/national-program-cancer-registries/index.html on July 2, 2025.
Liu PH, Pruitt SL, Singal AG, Murphy CC. Comparing SEER and NCDB: a case study using colorectal cancer. Cancer Causes Control. 2024; 35(11):1477-1485. doi: 10.1007/s10552-024-01902-3.
National Cancer Institute. Surveillance, Epidemiology and End Results. Accessed at https://seer.cancer.gov/ on July 2, 2025.
Palis BE, Janczewski LM, Browner AE, et al. The National Cancer Database conforms to the standardized framework for registry and data quality. Ann Surg Oncol. 2024; 31:5546–5559. doi: 10.1245/s10434-024-15393-8.
Rollison DE, M Levin G, Warner JL, et al. Current and emerging informatics initiatives impactful to cancer registries. J Registry Manag. 2022; 49(4):153-160. PMID: 37260815.
White MC, Babcock F, Hayes NS, et al. The history and use of cancer registry data by publish health cancer control programs in the United States. Cancer. 2017; 123(24):4969-4976. doi: 10.1002/cncr.30905.
Last Revised: July 18, 2025
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