Data on Health and Well-being of American Indians, Alaska Natives, and Other Native Americans. Surveillance, Epidemiology, and End Results (SEER)

12/01/2006

Sponsor: U.S. Department of Health and Human Services (DHHS)/National Institutes of Health (NIH)/National Cancer Institute (NCI)
Description: The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute is responsible for the collection and reporting of cancer incidence and survival data from 15 population-based central cancer registries that cover 26 percent of the U.S. population. The U.S. racial/ethnic population coverage in SEER includes 23 percent of African Americans, 40 percent of Hispanics, 42 percent of American Indians and Alaska Natives, 53 percent of Asians, and 70 percent of Native Hawaiian and other Pacific Islanders. SEER data include patient demographic information as well as primary tumor site, tumor morphology and stage at diagnosis, first course of cancer treatment, and follow-up for vital status. SEER began collecting data on cancers diagnosed on January 1, 1973, which enables the analysis of longitudinal trends as well as current patterns of cancer.
Relevant Policy Issues: Disease-specific Measurements and Health Disparities.
Data Type(s): Registry
Unit of Analysis: Cancer case (may be more that one cancer diagnosis per person in the database).
Identification of AI/AN/NA: Detailed racial/ethnic information is collected for over 30 different racial/ethnic categories including, but not limited to:
  • White
  • Black
  • American Indian/Alaska Native (AI/AN)
  • Asian or Pacific Islander (e.g., Chinese, Japanese, Filipino, Native Hawaiian, Korean, ...others).
  • Hispanic/Latino
AI/AN/NA Population in Data Set: The SEER database includes information on over six million in situ and invasive cancer cases with more than 350,000 cases being added each year. Of these, over 28,000 cases are among AI/ANs. Geographic regions with large AI/AN populations in the publicly available SEER data include New Mexico, Alaska, California and the Seattle/Puget Sound area.
AI/AN/NA Subpopulations: Tribal affiliation is not reported in SEER data, but geographic-specific data analyses may better characterize cancer patterns in specific AI/AN subpopulations.
Geographic Scope: SEER covers geographically and demographically diverse populations in the U.S. including all residents of the states of CA, CT, HI, IA, KY, LA, NJ, NM, and UT; metropolitan areas of Atlanta, Detroit, Seattle; selected rural Georgia counties; and AI/AN populations in AK and AZ. Available geographic identifiers within the database include registry (which covers either a state or a group of counties) and county.
Date or Frequency: Data are available on an annual basis from 1973 to the present.
Data Collection Methodology: Population-based cancer registries from state or metropolitan area or rural county grouping submit data to the National Cancer Institute for inclusion in the SEER database. The cancer patient data are collected from health providers such as hospitals, clinics, pathology labs, and physician offices as well as from autopsy reports and death certificates. The data are subjected to rigorous data quality edits and investigations and must meet data quality standards. The SEER Program data are considered the international standard for cancer registry data quality.
Participation: Optional, without incentives. The population-based registries report their data through contracts or interagency agreements with the NCI.
Strengths: Registries contain a large number of AI/AN/NA respondents including a region that is predominantly Alaska Native. Data are collected on key policy issues including health; for example, detailed data are collected on cancer type, stage, morphology, first course of treatment, survival, cause of death and patient demographics. There are multiple years of data available.
Limitations: The SEER data are a definitive source of cancer incidence and survival data in the U.S., but coverage is limited to about 26 percent of the total U.S. population. Minority racial/ethnic groups, foreign-born, and urban populations are groups of special interest to the SEER program and are therefore somewhat overrepresented in the database. Although frequency distributions of tumor characteristics and observed survival may be generated for over 30 detailed racial/ethnic groups, incidence rate calculations are limited to the racial/ethnic groups for which population denominators are available from the Census Bureau. Incidence rates for AI/AN can be calculated for diagnoses in 1992 and later.

Although AI/AN are well-represented in the database, the three states (AZ, CA, and AK) for which data for AI/AN are primarily collected are not necessarily representative of all AI/AN, since there is evidence that cancer incidence may be different in geographically distinct AI/AN populations.

Other: Since 1994, the National Program of Cancer Registries (NPCR) has been funding state cancer registries to collect population-based cancer incidence data. Starting in 2001, NPCR began receiving data annually from funded programs with the goals of establishing the quality of the data and eventually releasing the data for use in public health planning. Currently, the United States Cancer Statistics on the NPCR website (www.cdc.gov/cancer/npcr/uscs) provides aggregate rates for states by race.  Information on AI/AN cancer incidence is available for some states that meet the 100,000 population criteria through this analysis system. NPCR plans to have a restricted use dataset available for use by researchers who meet specified criteria. Some NPCR registries provide county-level data on AI/AN to State Cancer Profiles (http://statecancerprofiles.cancer.gov).
Access Requirements and Use Restrictions: Potential users must sign a data use agreement (http://seer.cancer.gov/publicdata/access.html). Data tables are available without any data use agreement requirements.
Contact Information: Cancer Statistics Branch
Surveillance Research Program
Division of Cancer Control and Population Sciences
National Cancer Institute
Suite 504, MSC 8316
6116 Executive Boulevard
Bethesda, MD 20892-8316
(301) 496-8510

Information on SEER public use data is available at the following website: http://seer.cancer.gov/publicdata/

Questions can be addressed to: seerweb@imsweb.com.

 

View full report

Preview
Download

"report.pdf" (pdf, 1.56Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"apa.pdf" (pdf, 107.76Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"apb.pdf" (pdf, 88.97Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"apc.pdf" (pdf, 233.07Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"apd.pdf" (pdf, 129.03Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®