Data Sources—National Institutes of Health (NIH)
Surveillance, Epidemiology, and End Results (SEER) Program
U.S. Department of Health and Human Services, National Institutes of Health (NIH), National Cancer Institute (NCI), Division of Cancer Control and Population Sciences (DCCPS), Surveillance Research Program, Cancer Statistics Branch.
NCI's SEER Program is the most authoritative source of information on cancer incidence and survival in the United States.
The SEER Program currently collects and publishes cancer incidence and survival data from 12 population-based cancer registries and 3 supplemental registries covering approximately 14% 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 county population estimates implemented in the NCI SEER*Stat software for the calculation of cancer incidence and mortality rates represent a modification of the annual time series of July 1 county population estimates by age, gender, race, and Hispanic origin. These estimates were produced by the Population Estimates Program of the U.S. Census Bureau with support from NCI through an interagency agreement.
Patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and followup for vital status.
Age, gender, race, year of diagnosis, geographic areas.
National, States with registries.
Ries LAG, Harkins D, Krapcho M, et al, eds. SEER cancer statistics review, 1975-2003. Bethesda, MD: National Cancer Institute; 2006, based on November 2005 SEER data submission. Available at: http://seer.cancer.gov/csr/1975_2003/.
Surveillance, Epidemiology, and End Results (SEER) Program SEER*Stat Database: incidence - SEER 13 regs limited-use, Nov 2006 sub (1992-2004) — linked to county attributes — total U.S., 1969-2004 counties. Bethesda, MD: NCI, DCCPS, Surveillance Research Program, Cancer Statistics Branch; released April 2007, based on the November 2006 submission. Available at http://www.seer.cancer.gov.
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United States Renal Data System (USRDS)
U.S. Department of Health and Human Services, National Institutes of Health (NIH), National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK), in collaboration with the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services (CMS).
Mode of Administration
Continuous mandated reporting from physicians who treat end stage renal disease (ESRD).
Survey Sample Design
The database consists of patient and facility records from the CMS ESRD Program Management and Medical Information System, the Annual Facility Survey, and data on transplant followup and Medicare Part A and B services derived from Medicare claims. 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. Special studies use random samples of patient population medical records.
Primary Survey Content
Date of onset of ESRD, treatment modality (including dialysis and kidney transplantation), 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, limitation of activity, and health care access and utilization.
Medicare and non-Medicare ESRD patients.
Age, gender, income, education, race, ethnicity.
Continuously since 1988.
National, State, county.
The USRDS provides data on the incidence, prevalence, mortality rates, and trends over time of ESRD by primary diagnosis, treatment modality, and sociodemographic variables.
U.S. Renal Data System. Researcher's guide to the USRDS database. Bethesda, MD: NIH, NIDDK; 2007.
U.S. Renal Data System. USRDS 2007 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. Bethesda, MD: NIH, NIDDK; 2007.
See http://www.usrds.org for updated annual data reports.
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