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National Healthcare Disparities Report, 2003

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Data Sources: National Institutes of Health


Surveillance, Epidemiology, and End Results Program (SEER)

Sponsor

National Cancer Institute, Division of Cancer Control and Population Sciences, Surveillance Research Program, Cancer Statistics Branch

Description

The SEER Program of the National Cancer Institute 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 11 population-based cancer registries and three supplemental registries covering approximately 14 percent of the US 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.

SEER population data:

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, sex, race and Hispanic origin produced by the Population Estimates Program of the Bureau of the Census with support from the NCI through an interagency agreement.

Primary Survey Content

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

Population Targeted

Age adjusted 2000 US standard million population.

Demographic Data

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

Years Collected

Since 1973.

Schedule

Annual.

Geographic Estimates

National and the states with registries.

Contact information

Agency homepage: http://www.cancer.gov.

Data system homepage: http://seer.cancer.gov.

References

Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Edwards BK (eds). SEER Cancer Statistics Review, 1973-1999, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1973_1999/, 2002.

http://healthservices.cancer.gov/seermedicare/aboutdata/program.html

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United States Renal Data System (USRDS)

Sponsor

U.S. Department of Health and Human Services, National Institutes for Health (NIH), National Institute for Diabetes and Digestive and Kidney Disease (NIDDK) in collaboration with the U.S. Department of Health and Human Services, Health Care Financing Administration (HCFA).

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 follow up and Medicare parts A and B services derived from Medicare claims. These CMS-supplied data are supplemented by data from the Social Security Administration, the U.S. Department of Veterans Affairs facilities, the 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 utilize 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.

Population Targeted

Medicare and non-Medicare ESRD patients.

Demographic Data

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

Years Collected

Continuously since 1988.

Schedule

Annual.

Geographic Estimates

National, State, and county.

Notes

The USRDS provides data on the incidence, prevalence, mortality rates, and trends over time of end-stage renal disease by primary diagnosis, treatment modality, and sociodemographic variables.

Contact Information

Agency homepage: http://www.niddk.nih.gov.

Data system homepage: http://www.usrds.org.

References

U.S. Renal Data System, USRDS 2000 Annual Data Report. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD. June 2000.

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