Data Sources—National Institutes of Health (NIH)

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Surveillance, Epidemiology, and End Results Program (SEER)

Sponsor

U.S. Department of Health and Human Services, National Institutes of Health (NIH), National Cancer Institute (NCI), Division of Cancer Control and Population Sciences, Surveillance Research Program, Cancer Statistics Branch.

Description

The SEER Program is an authoritative source of information on cancer incidence and survival in the United States. SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 26% of the U.S. population.

Geographic areas were selected for inclusion in the SEER Program based on their ability to operate and maintain a high-quality population-based cancer reporting system and for their epidemiologically significant population subgroups.

The SEER Program registries routinely collect data on patients with cancer diagnoses among residents of their respective geographic coverage areas.

Primary Content

Patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and vital status.

Population Targeted

U.S. population. The population data used in calculating cancer rates is obtained periodically from the Census Bureau.

Demographic Data

Age, sex, race, year of diagnosis, and geographic areas.

Years Collected

Since 1973.

Schedule

Annual.

Geographic Estimates

National and States with registries.

Notes

The SEER*Stat statistical software provides a convenient, intuitive mechanism for the analysis of SEER and other cancer-related databases. Cancer incidence rates used for the NHQR and NHDR were generated using the SEER*Stat statistical software and were adjusted to the 2000 U.S. standard million population by 5-year age groups.

Contact Information

Agency home page: http://www.cancer.gov.

Data system home page: http://www.seer.cancer.gov.

References

Ries LAG, Harkins D, Krapcho M, et al., eds. SEER cancer statistics review, 1975-2003. Bethesda, MD: National Cancer Institute; 2006. Available at: http://seer.cancer.gov/csr/1975_2003/.

United States Renal Data System (USRDS)

Sponsor

U.S. Department of Health and Human Services, National Institutes of Health (NIH), National Institute for Diabetes and Digestive and Kidney Disease (NIDDK) in collaboration with the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid (CMS).

Description

The USRDS is a national data system that collects, analyzes, and distributes information about end stage renal disease (ESRD) in the United States. It includes continuous mandated reporting from physicians who treat ESRD. The major source of ESRD patient information for the USRDS is the CMS Renal Beneficiary and Utilization System (REBUS)/Program Management and Medical Information System (PMMIS) database. The REBUS/PMMIS database contains demographic, diagnostic, and treatment history information for all Medicare beneficiaries with ESRD. The database has been expanded to include non-Medicare patients.

These CMS-supplied data are supplemented by data from the Social Security Administration, U.S. Department of Veterans Affairs facilities, U.S. Census Bureau, local and national ESRD provider databases, and international ESRD registries. Patient-specific data are compiled from medical records, as well as data on medical providers and treatment facilities.

Primary Content

Date of onset of ESRD, treatment modality, causes of death, patient survival, hospitalization, cost and cost-effectiveness, and institutional providers of ESRD treatment. Questions in special surveys cover behavioral risk factors (for example, alcohol and tobacco use), preventive health measures, health status, activity limitations, and health care access and utilization.

Population Targeted

Medicare and non-Medicare ESRD patients.

Demographic Data

Gender, age, income, education, race, and ethnicity.

Years Collected

Continuously since 1988.

Schedule

Annual.

Geographic Estimates

National, State, and county.

Contact Information

Agency home page: http://www.niddk.nih.gov.

Data system home page: http://www.usrds.org.

References

U.S. Renal Data System. USRDS 2008 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. Bethesda, MD: National Institute of Diabetes and Digestive and Kidney Diseases; 2008. More information is available at: http://www.usrds.org/research.htm.

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