Cancer Incidence – Surveillance, Epidemiology, and End Results (SEER) Registries Research Data

metadata:


Identification_Information:
Citation:
Citation_Information:
Originator:
U.S. Department of Health and Human Services - National Cancer Institute, (NCI)
Publication_Date: April 15 2014
Title: Cancer Incidence – Surveillance, Epidemiology, and End Results (SEER) Registries Research Data
Edition: None
Geospatial_Data_Presentation_Form: Vector Digital Data
Publication_Information:
Publication_Place: Bethesda, Maryland
Publisher: National Cancer Institute, Surveillance Systems Branch
Online_Linkage: <http://seer.cancer.gov>
Description:
Abstract:
SEER Research Data cancer incidence data with associated population data. Geographic areas available are county and SEER registry.
Purpose:
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute collects and distributes high quality, comprehensive cancer data from a number of population-based cancer registries. Data include patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and survival within each stage.
Supplemental_Information:
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute is a source of information on cancer incidence and survival in the United States. Case ascertainment for SEER began on January 1, 1973, in the states of Connecticut, Iowa, New Mexico, Utah, and Hawaii and the metropolitan areas of Detroit and San Francisco-Oakland. In 1974-1975, the metropolitan area of Atlanta and the 13-county Seattle-Puget Sound area were added. In 1978, 10 predominantly black rural counties in Georgia were added, followed in 1980 by the addition of American Indians residing in Arizona. Three additional geographic areas participated in the SEER program prior to 1990: New Orleans, Louisiana (1974-1977, rejoined 2001); New Jersey (1979-1989, rejoined 2001); and Puerto Rico (1973-1989). The National Cancer Institute also began funding a cancer registry that, with technical assistance from SEER, collects information on cancer cases among Alaska Native populations residing in Alaska. In 1992, the SEER Program was expanded to increase coverage of minority populations, especially Hispanics, by adding Los Angeles County and four counties in the San Jose-Monterey area south of San Francisco. In 2001, the SEER Program expanded coverage to include Kentucky and Greater California, and New Jersey and Louisiana once again became participants. In 2010, the SEER program expanded coverage to include all of the state of Georgia.
SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 28 percent of the US population. For more information on this, please view the SEER Research Data. SEER coverage includes 26 percent of African Americans, 38 percent of Hispanics, 44 percent of American Indians and Alaska Natives, 50 percent of Asians, and 67 percent of Hawaiian/Pacific Islanders. (Details are provided in the table: Number of Persons by Race and Hispanic Ethnicity for SEER Participants.) The SEER Registries routinely collect data on patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and survival within each stage. The mortality data reported by SEER are provided by the National Center for Health Statistics and cover the entire US population.
The SEER Research Data Data include SEER incidence and population data associated by age, sex, race, year of diagnosis, and geographic areas (including SEER registry and county).
Time_Period_of_Content:
Time_Period_Information:
Range_of_Dates/Times:
Beginning_Date: 1973
Ending_Date: 2011
Status:
Maintenance_and_Update_Frequency: Annually
Spatial_Domain:
Bounding_Coordinates:
West_Bounding_Coordinate: -178.217598
East_Bounding_Coordinate: -66.969271
North_Bounding_Coordinate: 71.406235
South_Bounding_Coordinate: 18.921786
Keywords:
Theme:
Theme_Keyword_Thesaurus: Not Applicable
Theme_Keyword: Cancer, Incidence, SEER, Epidemiology, Health, Disease, Registry
Place:
Place_Keyword_Thesaurus: Not Applicable
Place_Keyword:
United States, US, SEER, SEER 9, SEER 13, SEER 17, SEER 18, County, Alaska, Arizona, Atlanta (Georgia), California, Connecticut, Detroit (Michigan), Hawaii, Iowa, New Mexico, Rural Georgia, San Francisco – Oakland (California), San Jose – Monterey (California), Seattle (Washington), Utah, Kentucky, Los Angeles, Louisiana, New Jersey, Greater Georgia
Access_Constraints:
A signed SEER Research Data Data Agreement form is required to access the SEER data. <http://seer.cancer.gov/data/request.html>
Use_Constraints:
1. You may not use nor permit others to use the data in any way.
2. You may not present/publish data in which an individual can be identified. You may not publish any information on a single individual including any information generated on an individual case by the case listing session of SEER*Stat. In addition, publication of small cell sizes should be avoided.
3. You may not attempt to link nor permit others to link the data with individually identified records in another data base.
4. You may not attempt to learn the identity of any person whose cancer data is contained in the supplied file(s).
5. If the identity of any person is discovered inadvertently, then the following should be done; a) no use will be made of this knowledge, b) the SEER Program will be notified of the incident, c) no one else will be informed of the discovered identity.
6. You may not release nor permit others to release the data in full or in part to any person except with the written approval of the SEER Program.
7. If accessing the data from a centralized location on a time sharing computer system or LAN with SEER*Stat or another statistical package, you may not share your logon name and password with any other individuals. You may also not allow any other individuals to use your computer account after you have logged on with your logon name and password.
8. For all software provided by the SEER Program, you may not copy, distribute, reverse engineer, profit from its sale or use, or incorporate it in any other software system.
9. The source of information should be cited in all publications. The appropriate citation is associated with the data file used. Please see Suggested Citations on the SEER*Stat Help menu, or the Readme.txt associated with the ASCII text version of the SEER data.

Data_Quality_Information:
Logical_Consistency_Report:
The SEER Program is considered the standard for quality among cancer registries around the world. Quality control has been an integral part of SEER since its inception.
Completeness_Report:
Studies are conducted in the SEER areas to evaluate the quality and completeness of the data being reported (SEER's standard for case ascertainment is 98 percent). Quality Control studies are conducted every other year, actually in even numbered calendar years. These include potentially casefinding, reabstracting/recoding, and reliability studies. The latter involve virtually all abstractors and coders in each registry coding the same 10 to 20 cases which are selected to focus on coding issues that are known to be a problem. The cases are also coded by "experts" to obtain the correct answers. In odd numbered calendar years, training is conducted for SEER registries that focuses on problems identified in the QC studies.
Lineage:
Source_Information:
Source_Citation:
Citation_Information:
Originator:
U.S. Department of Health and Human Services - National Cancer Institute, (NCI)
Publication_Date: April 15 2014
Title: Cancer Incidence – Surveillance, Epidemiology, and End Results (SEER) Registries Research Data
Edition: November 2013 Submission
Geospatial_Data_Presentation_Form: Tabular Data
Publication_Information:
Publication_Place: Bethesda, Maryland
Publisher: National Cancer Institute, Surveillance Systems Branch
Other_Citation_Details:

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 9 Regs Research Data, Nov 2013 Sub (1973-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 13 Regs Research Data, Nov 2013 Sub (1992-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 18 Regs Research Data, Nov 2013 Sub (2000-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) ASCII Text Data: Incidence - SEER 9 Regs Research Data, Nov 2013 Sub (1973-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) ASCII Text Data: Incidence - SEER 13 Regs Research Data, Nov 2013 Sub (1992-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) ASCII Text Data: Incidence - SEER 18 Regs Research Data, Nov 2013 Sub (2000-2011) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2014, based on the November 2013 submission.

Online_Linkage: <http://seer.cancer.gov>
Type_of_Source_Media: DVD, Text File, Computer Program
Source_Time_Period_of_Content:
Time_Period_Information:
Range_of_Dates/Times:
Beginning_Date: 1973
Ending_Date: 2011
Source_Citation_Abbreviation: SEER Cancer Incidence November 2013 submission
Source_Contribution: Used for Data.
Process_Step:
Process_Description:
SEER 9 Registries Database
The SEER 9 registries are Atlanta, Connecticut, Detroit, Hawaii, Iowa, New Mexico, San Francisco-Oakland, Seattle-Puget Sound, and Utah. In this data set, cases diagnosed from 1973 through 2011 are available for all registries except Seattle-Puget Sound (1974+) and Atlanta (1975+). The database contains one record for each of 4,524,099 tumors. Cases are associated with the population data using three racial groups: White, Black, and Other. The Other race category used in the SEER 9 Registry database consists of American Indian/Alaska Native and Asian/Pacific Islander combined.
SEER 13 Registries Database
This dataset contains data from the SEER 9 registries (listed above), plus Los Angeles, San Jose-Monterey, Rural Georgia, and the Alaska Native Tumor Registry. In population-linked versions of these data, cases diagnosed from 1992 through 2011 are available, one record for each of 3,831,095 tumors. Cases are associated with the population data using four racial groups: White, Black, American Indian/Alaska Native, Asian/Pacific Islander and Hispanic origin.
SEER 18 Registries Database
This database contains data from the SEER 13, plus the Greater California, Kentucky, Louisiana, New Jersey, and Greater Georgia. In this dataset, cases from 2000-2011 are available, but because of the impact of Hurricane Katrina on Louisiana's population for the July - December 2005 time period, Louisiana cases diagnosed for that six-month time period have been excluded from the research database. This database contains one record for each of 5,092,363 tumors. Hurricane Katrina Impacted Louisiana Cases (cases diagnosed from July-December 2005) are provided with the data, but they are considered supplemental data. The research database plus the Louisiana July-December 2005 cases contain 5,102,908 tumor records. See Adjustments for Areas Impacted by Hurricanes Katrina and Ritafor more information. In SEER*Stat sessions that do not require population data (e.g., frequencies, survival, case listing), all public data for SEER registries are included in one database (SEER 18 Registry 1973-2011 with varying years of diagnosis per registry). This database includes 8,196,152 tumors diagnosed from 1973-2011, and 8,206,697 tumors diagnosed from 1973-2011 including the Hurricane Katrina Impacted Louisiana Cases.

See Number of SEER Participants by Race and Hispanic Ethnicityfor the percentage of the U.S. population covered by each registry combination.

* The "SEER Research" data used to be named the "SEER Limited-Use" data file. The data are available to researchers free-of-charge for research purposes. Each individual who accesses the data must first sign a data-use agreement.
Source_Used_Citation_Abbreviation: SEER 1973 - 2011 November 2013 submission
Process_Date: November 2013

Entity_and_Attribute_Information:
Overview_Description:
Entity_and_Attribute_Overview: Documentation from SEER Website.
Entity_and_Attribute_Detail_Citation: <http://seer.cancer.gov/data/documentation.html>

Distribution_Information:
Distributor:
Contact_Information:
Contact_Organization_Primary:
Contact_Organization: NCI
Contact_Address:
Address_Type: Email
Address: seerweb@imsweb.com
Contact_Instructions: Please email seerweb@imsweb.com with questions.
Resource_Description: ASCII (text data), Research Data DVD or SEER*Stat Software
Distribution_Liability:
These data were prepared by an agency of the Unites States Government. Neither the United States Government nor and agency thereof, nor any of their employees, make any warranty, expressed or implied, or assumes any legal liability or responsibility for the accuracy, completeness, or usefulness of any information, apparatus, product, or process disclosed in this report, or represents that its use would not infringe privately owned rights. Reference therein to any specific commercial product, process, or service by trade name, trademark, manufacturer, or otherwise does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Unites States Government or any agency thereof. Any views and opinions of authors expressed herein do not necessarily state or reflect those of the United States Government or any agency thereof.
Standard_Order_Process:
Digital_Form:
Digital_Transfer_Information:
Format_Name: ASCII
Format_Version_Date: April 15, 2014
Transfer_Size: 12.501
Digital_Transfer_Option:
Online_Option:
Computer_Contact_Information:
Network_Address:
Network_Resource_Name: <http://seer.cancer.gov>
Access_Instructions:
There are three ways to obtain the Research Data data. Please read through each option on the web page below before making a decision as to which methods best suits your needs. A signed SEER Research Data Data Agreement is required in each case. All options provide access to the SEER Research Data Data. You must use SEER*Stat in client-server mode in order to access US mortality data and databases for calculating incidence-based mortality rates.
<http://seer.cancer.gov/data/options.html>
Fees:
This data is freely available provided that you meet the data use requirements.

metadata_Reference_Information:
metadata_Date: 20100331
metadata_Contact:
Contact_Information:
Contact_Organization_Primary:
Contact_Organization: NCI
Contact_Address:
Address_Type: Email
Address: seerweb@imsweb.com
Contact_Instructions: Please email seerweb@imsweb.com with questions.
metadata_Standard_Name: FGCD Contact Standards for Digital Geospatial metadata
metadata_Standard_Version: FGDC-STD-001-1998

End of metadata.