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pdfNational Program of Cancer Registries
Cancer Surveillance System (NPCR-CSS)
2025 Data Release Policy
Diagnosis Years 1995–2024
Policy Revised July 2025
Cancer Surveillance Branch
Division of Cancer Prevention and Control
National Center for Chronic Disease Prevention and Health Promotion
CDC
4770 Buford Hwy, N.E., Mailstop S107-4
Atlanta, GA 30341-3717
E-mail: uscsdata@cdc.gov (specify “NPCR-CSS” in subject line)
Table of Contents
Introduction.............................................................................................................................................................................. 3
Overview of Data ..................................................................................................................................................................... 3
Data Release Activities ........................................................................................................................................................... 4
Protection of Data ................................................................................................................................................................. 11
References ............................................................................................................................................................................ 14
Table 1: Comparison of the National Program of Cancer Registries-Cancer Surveillance System Datasets ...................... 16
Appendix A: State and Metro Area Cancer Registries .......................................................................................................... 20
Appendix B: NPCR-CSS Overview of Data Security ............................................................................................................ 22
Appendix C: Data Items for CBTRUS ................................................................................................................................... 23
Appendix D: NPCR/SEER USCS Analytic Data Use Agreement ......................................................................................... 26
Appendix E: CDC Non-Disclosure Agreement...................................................................................................................... 29
Appendix F: Data Items for NPCR/SEER USCS Incidence Analytic Dataset ...................................................................... 37
Appendix G: Data Items for NPCR Internal Survival Dataset ............................................................................................... 39
Appendix H: NPCR-CSS 308(d) Assurance of Confidentiality Statement ............................................................................ 41
Appendix I: Frequently Asked Questions About the NPCR-CSS 308(d) Assurance of Confidentiality ................................ 43
Appendix J: Data Items for NPCR/SEER USCS Incidence Public Use Research Dataset .................................................. 46
Appendix K: NPCR/SEER – U.S. Cancer Statistics Public Use Research Database Data Use Agreement ....................... 48
Appendix L: NPCR Data at the NCHS RDC Questions and Answers .................................................................................. 50
Appendix M: Data Items for Restricted-Access Dataset (RDC)............................................................................................ 54
Appendix N: NPCR-CSS Levels of Data Access .................................................................................................................. 56
Appendix O: Data Items for NPCR/SEER USCS Delay-Adjusted Database ....................................................................... 56
Appendix P: Data Items for NPCR Prevalence Database ...................................................... Error! Bookmark not defined.
NPCR-CSS 2025 Data Release Policy • Page 2
Introduction
This document describes the format and content of data that the Centers for Disease Control and Prevention’s (CDC’s)
National Program of Cancer Registries (NPCR) Cancer Surveillance System (CSS) releases or shares. This multi-year
policy updates the July 2024 NPCR-CSS Data Release Policy. This policy applies to data submitted to CDC for the 2025
NPCR-CSS data submission and for all future data submissions until a new policy is provided.
The NPCR-CSS Privacy Steward, as authorized by the Chief of the Cancer Surveillance Branch, clears all releases of
state and territory data, ensuring that the data are released according to the terms of this policy.
It is possible that, in future years, data release practices or the content and format of released data may vary from those
described in these guidelines. Such changes may occur because of improvements in the quality of the data, changes in
information technology, and evolving data needs. However, if such variations occur, the data release practices will provide
comparable protection (or more protection) for patient confidentiality to that described in this policy. If it is anticipated that
any data will be released with less protection (as determined by the NPCR-CSS Privacy Steward) for patient
confidentiality than described in this policy, NPCR central cancer registries will be notified and have ample time to
respond before the data are released. This policy is reviewed annually by the NPCR-CSS Privacy Steward and other
appropriate CDC staff members to determine whether revisions are needed.
Summary of Changes
•
In the Analytic Datasets, updated the information to indicate that the survival and prevalence databases will now
be combined, rather than separate files (page 9).
•
Updated data item lists for Data Items for CBTRUS (Appendix C), NPCR/SEER USCS Incidence Analytic Dataset
(Appendix F), NPCR Internal Survival Dataset (Appendix G), NPCR/SEER USCS Incidence Public-Use Research
Dataset (Appendix J), NPCR/SEER USCS Public Use Research Database User Agreement (Appendix K), Data
Items for Restricted-Access Dataset (Appendix M), and Data Items for NPCR Prevalence Database (Appendix O).
Overview of Data
In 1992 Congress established NPCR by enacting the Cancer Registries Amendment Act, Public Law 102-515.1 The law
authorized CDC to provide funds and technical assistance to states and territories to improve or enhance existing cancer
registries and to plan for and implement population-based central cancer registries where they did not exist. NPCR’s
purpose is to assure the availability of more complete local, state, regional, and national cancer incidence data to plan and
evaluate cancer control interventions and for research. NPCR adopted reporting requirements and definitions consistent
with the National Cancer Institute’s (NCI) Surveillance, Epidemiology, and End Results (SEER) program;2,3 required the
use of uniform data items, codes, and record layouts as defined by the consensus of members of the North American
Association of Central Cancer Registries (NAACCR);4 and established standards for data management and data
completeness, timeliness, and quality similar to those NAACCR recommended.4,5 In 1994, the first 37 states received
funding from CDC.6 Currently, 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S.
Pacific Island Jurisdictions are funded by NPCR (Appendix A).7 NPCR-funded central cancer registries collect data on
patient demographics, primary tumor site, morphology, stage of disease at diagnosis, and first course of treatment. In
addition, NPCR central cancer registries conduct follow-up for vital status by linking with state and national death files or
active case follow-up.
Invasive and in situ cancer case reports are submitted to CDC by population-based statewide central cancer registries in
all 46 participating states, the District of Columbia, Puerto Rico, Virgin Islands, and the U.S. Pacific Island Jurisdictions. In
each state or territory, laws and regulations mandate the reporting of cancer cases by facilities and practitioners who
diagnose or treat cancer to the state or territory health department or its designee. The central cancer registry receives
case reports from facilities and practitioners throughout the state or territory and processes them according to standard
data management procedures.5 Personal identifiers including the patient’s name, Social Security number, and street
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address are removed from the NPCR-CSS submission prior to the encryption and electronic transmission of these case
reports to a contractor acting on behalf of CDC. CDC and the contractor adhere to strict data security procedures when
receiving, processing, and managing the data (Appendix B). CDC has an Office for Human Research Protections
(OHRP)-approved, federal-wide assurance of compliance with rules for the protection of human subjects in research (45
Code of Federal Regulations 46, available at www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/).
NPCR-CSS received formal approval (protocol #2594) from CDC’s Institutional Review Board (IRB) in October 1999 and
annual approval was approved through 2020. In 2021, under the Common Rule (45 Code of Federal Regulations Part 46,
Common Rule 2018), NPCR-CSS was deemed to be a non-research public health surveillance project and annual IRB
review is no longer necessary.
Central cancer registries and federal agencies routinely publish cancer incidence data 23 months after the close of each
diagnosis year based on data that meet data quality standards.7,8 However, other versions of the same data, based on the
data file as it exists at different time periods, are usually available. For example, some central cancer registries have
preliminary data available as soon as 12 months after the close of each diagnosis year. After the publication of official
statistics, central cancer registries, as well as CDC and the National Cancer Institute (NCI), continue to update and
republish data with new information incorporated. When cancer incidence data are published, it is common practice to
document either the data submission date (when the data were submitted to CDC or NCI) or the date that the file was
prepared. Changes in central cancer registry incidence data that occur more than 23 months after the close of a diagnosis
year are likely to be small; however, delays in reporting are more likely to affect certain cancer sites and may be important
for some research studies.9
CDC generates multiple data products using NPCR-only data and combined NPCR and SEER data. The combined NPCR
and SEER data are referred to as U.S. Cancer Statistics (USCS). USCS is the official federal cancer statistics, providing
the most up-to-date information on the U.S. population.
Data Release Activities
As described in DP22-2202, participation in all CDC-created and hosted analytic datasets and web-based data query
systems, as outlined in this policy, is a required strategy and activity.10 Therefore, the NPCR-CSS Dataset Participation
Agreement is no longer provided.
Public Web-based Query Systems
For purposes of this policy, public web-based query systems are defined as datasets that are comprised of aggregated
data (not individual case-specific data or microdata) that have been modified according to accepted procedures to block
breaches of confidentiality and prevent disclosure of the patient’s identity or confidential information. They are stored in a
database behind a CDC firewall that is either case-specific microdata or pre-analyzed data tables.11, 12-17 Users can
access only aggregate counts and rates with all confidentiality protections built in. A combination of confidentiality
protection measures is employed for each public web-based query system (see Table 1). These systems do not contain
information that is identifiable or potentially identifiable according to currently accepted procedures for reducing disclosure
risk.11, 12-17 Before each system is finalized, the aggregate values are analyzed to determine whether there is a need for
complementary cell suppression.11, 12-17 If appropriate, the analysis includes consultation with a statistician with expertise
in statistical disclosure limitation techniques. Following the analysis, complementary cell suppression is applied as
needed.
There are no restrictions on access to public web-based query systems. A public release disclosure statement (see Public
Release Disclosure Statement) cautions users against inappropriate use of the data or inappropriate disclosure of
information. Data are released as delimited ASCII files, a web-based query system, or possibly through other data
products (see Table 1). As a convenience to NPCR central cancer registries, states and territories may request from CDC
a copy of their complete state- or territory-specific analytic database that is used to populate each public web-based query
system. The following public web-based query systems are currently being released:
NPCR-CSS 2025 Data Release Policy • Page 4
•
•
•
USCS Data Visualizations tool
CDC WONDER – USCS incidence and incidence/mortality rate ratios
Federal partners’ web-based query systems:
o NCI’s State Cancer Profiles
o CDC’s Environmental Public Health Program’s Tracking Network
o CDC’s Chronic Disease Indicators (CDI) tool
o CDC’s Melanoma Dashboard
All NPCR-CSS public web-based query systems consist of cancer incidence data selected from the NPCR/SEER analytic
database. This is the same database that provides cancer incidence data for the annual release of USCS data products,
including the Data Visualizations tool, public use database and State Cancer Profiles. Data sources, case definitions,
basic registry eligibility criteria in terms of required data quality, population denominator sources, methods for calculating
incidence rates, and the rationale for specific cell suppression thresholds are as described in the USCS Data
Visualizations Tool Technical Notes, unless noted in separate documentation that accompanies the data.
Separate documentation may accompany each data product that describes its unique features, such as the data
submission date, percentage of the U.S. population covered, diagnosis years and cancer sites included, variables
included, data suppression rules, any special data quality criteria required for inclusion, and any unique statistical
methods employed.
USCS Data Visualizations Tool
The USCS Data Visualizations tool is a web-based application built with D3 Javascript libraries, a React framework, and
web application programming interfaces (APIs) that outputs data in hypertext markup language (HTML) containing the
aggregate counts and rates for incidence, mortality, prevalence, and survival estimates published annually, along with text
documentation and data visualizations. The tool is available at www.cdc.gov/cancer/dataviz.
It displays single year and 5-year aggregate counts, age-adjusted rates, and 95% confidence intervals by primary site,
sex, race and ethnicity (see Table 1 for race and ethnicity categories) at the county (5-year aggregate), Congressional
district (5-year aggregate), state or territory, and national levels. Congressional district estimates (estimated 5-year
aggregate counts and age-adjusted rates) are presented by sex, race, and ethnicity (all races/ethnicities, non-Hispanic
White, Black, and Hispanic). In addition, cancers grouped by associated risk factors are presented by state, sex, race, and
age-group (single year and 5-year aggregate) in Data Visualizations tool. National and state prevalence, data by stage at
diagnosis, and survival by stage for select sites are presented by sex, race/ethnicity, and age at the national and state
level. Stage at diagnosis is categorized as localized, regional, distant, and unknown or unstaged. Preliminary and delayadjusted incidence rates and counts, as well as other new indicators, may be published in the tool.
The Data Visualizations tool’s database is behind a CDC firewall with pre-tabulated data created using SEER*Stat
queries, which allows for the display of counts and rates that meet suppression and confidentiality protections. Users can
access only aggregate counts and rates with all confidentiality protections built in. Downloadable ASCII files with the pretabulated data are available from CDC’s website. States and territories may request a state- or territory-specific web API.
CDC WONDER – USCS Incidence, Mortality, and Incidence/Mortality Ratios
The USCS dataset available on CDC WONDER (https://wonder.cdc.gov/cancer.html) displays the aggregate incidence
and mortality counts, rates, and 95% confidence intervals by primary site, sex, race, and ethnicity at the state, county,
regional, metropolitan statistical area (MSA), and national levels. Cancer incidence and mortality rate ratios are also
available by year, state, MSA, race, ethnicity, sex, and cancer site. The WONDER database is stored behind a CDC
firewall with case-specific microdata. Users can access only aggregate counts and rates with all confidentiality protections
built in.
CDC WONDER allows users more flexibility in creating cross-tabulations than the Data Visualizations tool. While the
same underlying USCS data are available in both tools, more detailed breakdowns of counts and rates are available
NPCR-CSS 2025 Data Release Policy • Page 5
through WONDER. The additional values result from variable selections that are not currently available in the Data
Visualizations tool (see Table 1) and include results for MSAs that have a population of 50,000 or higher and standard 5year age groups that the user can combine.
Federal Partners’ Web-based Systems
CDC shares aggregated data with federal partners for display in their web-based query systems. The data are generated
specifically for the partners’ needs and are shared via ASCII files.
Unless otherwise noted below, the data generally consist of aggregate cancer incidence counts, crude rates, and ageadjusted rates for selected primary sites, age groups, and counties in the United States (see Table 1 for more details).
Future versions may contain more detail about cancer at the county level. Beginning in 2008, CDC began routinely
publishing county data averaged over 5 years.
State Cancer Profiles
State Cancer Profiles is a web-based query tool that public health professionals and others can use to prioritize cancer
control efforts at the county, state, and national level. Data are released to NCI’s Surveillance, Epidemiology, and End
Results (SEER) program for the State Cancer Profiles data product, which presents average annual counts and ageadjusted incidence and mortality rates only.
Environmental Public Health Tracking Program
USCS data are provided to CDC’s National Center for Environmental Health’s Environmental Public Health Tracking
Program for display on a public facing web-based query system, called the Tracking Network. The Tracking Network uses
a database behind a CDC firewall with case-specific microdata to display incidence counts, age-adjusted rates, and 95%
confidence intervals, as well as other indicators (e.g., standardized incidence ratio), for selected primary sites and age
groups for selected geographic areas and time periods (see Table 1). Suppression will follow the NPCR-CSS standard
with results suppressed if the observed case count is <16. Single-year and 5-year aggregate data can be viewed at the
state level. Data, including smoothed rates, by 5-year aggregation are available at the county level.
Incidence counts and age-adjusted incidence rates for select cancers are displayed for various sub-county geographies.
Incidence rates are based on incidence counts stratified by census tract, year of diagnosis, age group (standard 19
groups), sex, and Census-based population estimates. These incidence counts and rates are displayed using aggregation
schemas recommended by a sub-county cancer data workgroup: spatial (census tract and geographies with a minimum of
5,000, 20,000, or 50,000 persons) and temporal (3-, 5-, 7-, or 10-year periods). Counts and rates are suppressed when
there are fewer than 16 cases or fewer than 100 persons in the geographic area. Specific to this project, an additional
suppression is applied when the relative standard error of the rate is greater than 30%.
For registries that opt-in, county-level standardized incidence ratios (SIR) are displayed on the Tracking Network. An SIR
is displayed for cancers displayed at the county-level in the Tracking Network Data Explorer Tool. Data are aggregated for
the most recent 3-year or 5-year periods (depending on a registry’s opt-in response). The SIRs are not stratified by sex,
age, or racial/ethnic group.
Chronic Disease Indicator Tool
This query system provides chronic disease and risk factor indicators in a uniform way. U.S. Cancer Statistics incidence
and mortality rates for invasive cancers, all sites combined and by selected sites (such as female breast, prostate, and
colorectal cancers).
Melanoma Dashboard
This dashboard was created in partnership with CDC's Environmental Public Health Tracking Program to help
communities address their unique melanoma prevention needs. It provides state- and county-level data on melanoma
incidence (using U.S. Cancer Statistics incidence data; 5- and 10-year aggregated data respectively), melanoma
NPCR-CSS 2025 Data Release Policy • Page 6
mortality, and UV irradiance. It also provides information about state policies regarding minors' access to indoor tanning
devices and sunscreen use at schools.
Data Release to Federal and Trusted Partners
American Cancer Society (ACS)
CDC shares NPCR and USCS data with ACS to promote collaborations on cancer surveillance and epidemiological
research efforts. ACS’s Surveillance and Health Services Research (SHSR) Program analyzes and disseminates cancer
statistics and identifies gaps and opportunities for cancer prevention, early detection, and treatment. The SHSR annually
publishes the statistical report, Facts & Figures, and peer-reviewed journal articles that are used by public health experts,
clinicians, and scientists.
In 2018, a Memorandum of Understanding was implemented with ACS, and ACS staff members must sign a Data Use
Agreement form and complete annual Assurance of Confidentiality training before they are given access to the data.
Beginning in 2020, due to changes in SEER’s data release policy, CDC also obtains approval from SEER before releasing
USCS data. CDC provides ACS staff access to the following databases with record-level data through SEER*Stat
software: USCS Delay-Adjusted database, NPCR Survival database, NPCR Prevalence database, and selected variables
from the NPCR and SEER Quality Control database. The Quality Control database shared with ACS is restricted to 24month data, excludes postal code and census tract variables, and excludes “day” fields for date of birth and date of death.
Central Brain Tumor Registry of the United States (CBTRUS)
CBTRUS annually publishes the print and web versions of the statistical report, Primary Brain Tumors in the United States
Statistical Report Supplement; a previous version of the report is available at: https://www.cbtrus.org/reports. The report
includes age-adjusted rates and corresponding 95% confidence intervals on brain and other central nervous system
tumors and is presented by state, histology, major histology grouping, primary site, behavior, sex, race, ethnicity, and age
at diagnosis. As a trusted partner, CBTRUS is provided access to the NPCR Survival Dataset to include survival
estimates in the annual report, conduct in-depth analyses, and respond to queries. CDC provides individual, record-level
data to CBTRUS for the publication of this report; Appendix C lists the variables included in this dataset. Only states
meeting the USCS publication criteria are included in the dataset.
In addition, CBTRUS uses these data to respond to inquiries that are more specific than those that are provided by the
report. For these inquiries, no individual record-level data are released; only aggregated data with the corresponding
confidence intervals (if applicable) and appropriate suppression criteria are provided to data inquirers. Attribution to NPCR
is provided. CBTRUS signs data use agreements before data are released for their report and future inquiries. For
questions, contact CBTRUS staff at cbtrus@aol.com.
International Association of Cancer Registries (IACR)
The International Association of Cancer Registries (http://www.iacr.com.fr/) (IACR) produces the Cancer Incidence in Five
Continents (CI5) and other special reports such as pediatric data reports including International Incidence of Childhood
Cancer (IICC). The CI5 series of monographs, published every five years, has become the reference source of data on
the international incidence of cancer. The most recent version was published in 2017. The CI5 databases provide access
to detailed information on the incidence of cancer recorded by cancer registries (regional or national) worldwide in two
formats (CI5 and CI5plus) and other reports also provide access to detailed information on the incidence of pediatric
cancers:
•
•
CI5 presents the basic data published in the CI5 volumes.
CI5plus contains annual incidence for selected cancer registries published in CI5 for the longest possible period.
When IACR requests data, the formal Call for Data Submission giving information on the evaluation procedure, likely
layout of how data will be presented, and questionnaire on registry operations will be available from the IACR website.
NPCR-CSS 2025 Data Release Policy • Page 7
NPCR may facilitate the call for data on behalf of awardees. NPCR will provide additional information regarding the CI5
Call for Data as it becomes available. The CI5 Call for Data has two components: the questionnaire and introductory text
and data submission.
Data submitted for CI5 may also be used for the IICC publication, making a separate data submission unnecessary. This
IACR product requires states to complete a separate questionnaire and introductory text.
States are responsible for completing the online questionnaires and providing introductory text indicating if the CI5 data
and introductory text are also used for the IICC product. NPCR will submit aggregated NPCR data for central cancer
registries meeting USCS publication criteria.
CONCORD
CONCORD is the program for worldwide surveillance of cancer survival, led by the London School of Hygiene & Tropical
Medicine and supported by the Union for International Cancer Control (UICC). CONCORD monitors progress toward the
UICC’s World Cancer Declaration, made in 2013: “major reductions in premature deaths from cancer, and improvements
in quality of life and cancer survival”.
A call for participation in the CONCORD studies is periodically issued and extends examination of worldwide cancer
survival trends for certain cancer sites. The protocol and dataset specifications will be posted to the NPCR-CSS
Document Server, CONCORD tab as they become available.
NPCR may facilitate the call for data on behalf of awardees by submitting NPCR data for central cancer registries meeting
USCS publication criteria for survival analyses: they meet USCS data quality criteria and have conducted active patient
follow-up or linked records with the National Death Index.
Agency for Healthcare Research and Quality (AHRQ)
The U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ) is the lead
federal agency charged with improving the safety and quality of America’s health care system. It develops and
disseminates knowledge, tools, and data to improve health care systems and help Americans, health care professionals,
and policy makers make informed health decisions. NPCR-CSS data are shared with AHRQ for reports on national health
care quality and disparities.
Analytic Datasets
USCS Analytic Data
Combined NPCR and SEER incidence data are referred to as USCS. CDC creates USCS analytic datasets each year
that include data from central cancer registries meeting USCS publication criteria and diagnosis year coverage. CDC, NCI
staff members, and contractors analyze USCS data as needed using these internal analytic databases.
The datasets are made available via SEER*Stat software to federal employees, fellows, and contractors in CDC’s Division
of Cancer Prevention and Control and NCI’s SEER program after obtaining SEER Research Plus access, signing an
NPCR Analytic Data Use Agreement (Appendix D) and CDC Nondisclosure Agreement (Appendix E) and completing
annual Assurance of Confidentiality training. The dataset is also available to approved partnering organizations and state
and territory central cancer registries after a Memorandum of Understanding and Data Use Agreements are signed (see
Appendix H and Appendix I).
In specially established collaborative relationships, researchers external to CDC, NCI, and ACS may be provided access
to the USCS analytic datasets. In these relationships, CDC staff must be included in the analytic project as a co-author,
Data Use Agreements must be signed, and Assurance of Confidentiality training must be completed before access is
provided. Additionally, access will only be allowed on-site at CDC’s Cancer Surveillance Branch offices. See the section
“External Data Requests”.
NPCR-CSS 2025 Data Release Policy • Page 8
Cancer surveillance and epidemiological analyses include assessment of the completeness, timeliness, and quality of
cancer incidence data and analyses of the cancer burden and survival as needed to meet national cancer control
objectives. Such analyses of state or territory and national data are conducted routinely by federal agencies including
CDC and NCI for programmatic or statistical purposes, as needed, to achieve the agencies’ mandates.
Five internal analytic datasets are routinely analyzed by CDC and NCI staff members:
NPCR/SEER USCS Incidence Analytic Dataset
CDC and NCI staff members and contractors conduct cancer surveillance and epidemiological research that results in
publications, data briefs, and presentations. Examples of research include descriptive analyses by racial and ethnic
populations for specific cancers, descriptions of cancer incidence trends, and descriptive analyses of the quality of the
data. Appendix F lists the variables available in this dataset.
NPCR Internal Survival and Prevalence Dataset
A dataset will be created that allows for both survival and prevalence estimates to be calculated. Cancer survival data are
critical for evaluating the progress and effect of early detection and screening programs, comprehensive cancer control
plans, and interventions from other sources. CDC’s NPCR-CSS calculates and publishes survival estimates on this
population at the national, state, and regional levels. This NPCR-CSS dataset supports analyses of survival estimates for
rare cancers that cannot be addressed otherwise and provides data for publication on the USCS Data Visualizations tool.
The database also provides limited-duration prevalence estimates for NPCR registries who meet USCS publication
criteria for all years included in the database and that have completed National Death Index linkages or active patient
follow-up for all years included in the database. Statistics generated from this dataset are published on the USCS Data
Visualizations tool. Appendix G lists the variables available in this combined survival and prevalence dataset.
NPCR/SEER Survival Dataset
This database contains data from NPCR- and SEER-funded registries that have completed National Death Index linkages
or active patient follow-up for all years included in the database and meet 95% completeness estimates. This dataset will
be used to assess Healthy People 2030 cancer objective C-11: Increase the proportion of cancer survivors who are living
5 years or longer after diagnosis. The variables included in the dataset are the same as the NPCR Internal Survival Data,
which are listed in Appendix G.
NPCR/SEER USCS Delay-Adjusted Dataset
Case-reporting delay may result in an underestimate of true incidence. Researchers can adjust for this delay using
composite delay factors, thus producing more precise cancer incidence trends. The composite delay factors
(https://surveillance.cancer.gov/delay/model.html) used in this database were developed by SEER and are used by
NPCR, SEER, and NAACCR. The delay-adjustment factors account for cancer site, registry, age, race, ethnicity, and
diagnosis year, and are used to estimate delay-adjusted counts and rates. The variables available in this dataset are
listed in Appendix O.
USCS American Indian and Alaska Native Incidence Analytic Database
CDC uses IHS linkage results for analyses of cancer incidence among American Indian and Alaska Native populations. In
addition to improving cancer incidence rates presented in USCS Data Visualizations tool, an employee in CDC’s Division
of Cancer Prevention and Control assigned to IHS maintains an analytic database, the USCS American Indian and Alaska
Native Incidence Analytic Database (AIAD). Access to this database is limited to approved CDC staff.
The data are used to respond to requests for cancer incidence rates for American Indian and Alaska Native populations
from tribal organizations. Five-year aggregate incidence counts, age-adjusted rates, and 95% confidence intervals for
selected primary sites are displayed in the USCS Data Visualizations tool (see Table 1). These data are limited to nonHispanic American Indian and Alaska Native people living in IHS Purchased/Referred Care Delivery Areas (PRCDA)
counties. Inclusion in this dataset also allows IHS to provide the state with the date of death obtained through National
NPCR-CSS 2025 Data Release Policy • Page 9
Death Index (NDI)-IHS linkage or the date the linkage occurred by diagnosis year for registries that complete an NDI
supplemental confidentiality agreement for application Y9-0033.
Requirements for Staff
In compliance with the 308(d) Assurance of Confidentiality, CDC and NCI employees and contractors and partner
organizations conducting these analyses are required to handle the information in accordance with principles outlined in
the CDC Staff Manual on Confidentiality and to follow the specific procedures documented in the NPCR-CSS
Confidentiality and Security Statement (appendices B, H, and I).
In addition, CDC, SEER, and partner organization staff members are required to acknowledge state and territory cancer
registries whenever NPCR-CSS data are presented, released, or published by making the following (or similar) statement:
These data were provided by central cancer registries participating in the National Program of Cancer Registries
(NPCR) and submitted to CDC in [Month, Year], and/or the Surveillance, Epidemiology, and End Results (SEER)
program and submitted to NCI in [Month, Year]. The dataset includes data for diagnosis years xxxx–xxxx
(excluding SEER-Metro Registry data).
NPCR/SEER USCS Incidence and Survival Public-Use Research Dataset
For purposes of this policy, the NPCR/SEER USCS Incidence Public-Use Research Dataset (Incidence PUD) and the
NPCR Survival Public-Use Research Dataset (Survival PUD) are defined as the version of the full NPCR/SEER USCS
microdata (individual case-specific data) that have been modified as needed to minimize the potential for disclosure of
confidential information. These datasets contain a subset of data items published in the NPCR/SEER USCS Incidence
Analytic dataset. Personal identifiers, such as a patient’s name, street address, and Social Security number, are not
included in these datasets as this information is not transmitted by central cancer registries to CDC as part of their annual
data submission. Certain data items, such as date of birth and reporting-source (death certificate only and autopsy only)
cases, may be removed from these research datasets to minimize the potential identification of individuals with a rare
cancer in a person of certain age or racial or ethnic group or living in a specific county. The list of the variables included in
the NPCR/SEER USCS Incidence Public-Use Dataset is in Appendix J. The NPCR Survival PUD is under development.
The NPCR-CSS Data Release Policy will be updated before its release.
The Incidence PUD dataset is available publicly through SEER*Stat software. Upon completion, the Survival PUD will be
made available through the same mechanism. Researchers are given access to the data after obtaining SEER Research
Plus access and signing an NPCR and SEER – U.S. Cancer Statistics Research Data Request Form (Appendix K). Every
time a user opens the public use research SEER*Stat databases, they will be required to electronically acknowledge the
database’s user requirements, which include that the data will be used for statistical reporting and analysis only and the
user will not attempt to identify any person or entity included in the database (Appendix K). Cell suppression of fewer than
16 cases is automatic and the SEER*Stat case listing function is disabled as additional data protection measures. The
Incidence PUD dataset allows authorized users to generate the authorized counts, crude rates, age-adjusted incidence
rates, and 95% confidence intervals to meet their specific needs.
Restricted-Access Research Dataset (RDC)
For purposes of this policy, the restricted-access dataset is defined as the version of the full NPCR/SEER USCS analytic
dataset, either aggregated data or microdata (individual case-specific data) that has been modified as needed to minimize
(but may not remove entirely) the potential for disclosure of confidential information.
CDC uses the National Center for Health Statistics’ Research Data Center (NCHS RDC) as a mechanism for researchers
outside of the Division of Cancer Prevention and Control (DCPC) to request and gain access to NPCR data for research
purposes. The data are available through the NCHS RDC only after the standard data quality reviews that occur as part of
the preparation for USCS. The restricted-access dataset is released to researchers through the NCHS RDC after CDC
authenticates the requestor’s identity and research intent through an extensive proposal review process, and the
NPCR-CSS 2025 Data Release Policy • Page 10
researcher completes the NCHS RDC’s confidentiality and security requirements. The requestor must also comply with
the NCHS RDC’s confidentiality procedures and data-sharing agreements.
The NCHS RDC has developed and maintains detailed data-sharing agreements and procedures for user authentication
and for logging and monitoring data releases. NPCR and NCHS RDC staff review project proposals. Proposals may also
be shared for review with central cancer registry staff whose data are included in the proposed project. User
documentation includes a data dictionary for every diagnosis year available at the NCHS RDC.
Using the NCHS RDC to manage data access provides the highest level of data security and protection of confidentiality
available for data analysis and allows CDC to comply with the Assurance of Confidentiality [308(d)] that was obtained for
the NPCR-CSS data. The NCHS RDC is also covered by a separate Assurance of Confidentiality [308(d)]. For further
information regarding the NCHS RDC, refer to Appendix L of this policy.
The restricted-access dataset does not contain personal identifiers such as a patient’s name, street address, or Social
Security number, as this information is not transmitted by central cancer registries to CDC as part of their annual data
submission. However, the dataset may contain information that is potentially identifiable especially when linked with other
datasets, such as the occurrence of a rare cancer in a person of a certain age or racial or ethnic group or living in a
specific county. The data are made available to researchers through a SAS dataset specific to each project created by
NCHS RDC staff. Researchers must include a data dictionary in their proposal, and only the requested variables are
included in the SAS file.
Data Release Under Controlled Conditions
CDC policy stipulates that a CDC program may consider release data that cannot be released as a public web-based
system, a research dataset, or a restricted-access dataset under certain controlled conditions.18 These controlled
conditions may include a CDC-controlled data center such as the NCHS RDC, on-site at CDC’s Cancer Surveillance
Branch offices, or through special licensing. NPCR-CSS data will not be released except as described above while this
policy is in place. Release of data under controlled conditions will be considered in discussions with partners, and a
determination will be made as to whether such releases of data will be considered for NPCR-CSS data.
Emergency and Provisional Data Releases
It is not anticipated that CDC will need to release NPCR-CSS data before the files have been modified as needed to
protect confidentiality as described in this policy. This is prohibited by the 308(d) Assurance of Confidentiality (appendices
B, H, and I).
Provisional data and draft data tables may be shared with CDC employees and contractors, NPCR central cancer
registries, and other partners to facilitate data quality reviews. When appropriate, individuals who participate in such
reviews sign an NPCR Analytic Data Use Agreement and a CDC Nondisclosure Agreement (when applicable) before
accessing the data or tables.
Protection of Data
Assurance of Confidentiality
All data collected and maintained by NPCR-CSS must be managed, presented, published, and released with strict
attention to confidentiality and security, consistent with the general principles and guidelines established by CDC for
confidential case data11,18-19 and specific restrictions imposed on NPCR-CSS data (appendices B, H, and I).1 Special care
must be given to cancer incidence data that are not directly identifiable because geographic and small cell data may be
indirectly identifying when combined with detailed information in case reports, laboratory reports, medical records, or
linkage with other data files.12-17
NPCR-CSS 2025 Data Release Policy • Page 11
NPCR-CSS has approval for protection under section 308(d) of the Public Health Services (PHS) Act (42 U.S.C. 242m(d))
(appendices B, H, and I). The 308(d) confidentiality assurance protects identifiable and potentially identifiable information
from being used for any purpose other than the purpose for which it was collected (unless the person or establishment
from which it was obtained has consented to such use). This assurance protects against disclosures under a court order
and provides protections that the Privacy Act of 1974 (5 U.S.C. 552a) does not. For example, the Privacy Act of 1974
protects individual participants, but the 308(d) confidentiality assurance also protects institutions. Confidentiality protection
granted by CDC promises participants and institutions that their data will be shared only with those individuals and
institutions listed in the project’s consent form or in its specified policies.
Suppression of Rates and Counts
When the numbers of cases or deaths used to compute rates are small, those rates tend to have poor reliability. Another
important reason for using a threshold value for suppressing cells is to protect the confidentiality of patients whose data
are included in a report by reducing or eliminating the risk of disclosing their identity.
Therefore, to discourage misinterpretation or misuse of rates or counts that are unstable because case or death counts
are small, annual incidence and death rates and counts in publicly available datasets and web-based query systems are
suppressed if the case or death counts are below 16. A count of fewer than about 16 results in a standard error of the rate
that is approximately 25% or more as large as the rate itself. Similarly, a case count below 16 results in the width of the
95% confidence interval around the rate being at least as large as the rate itself. These relationships were derived under
the assumption of a Poisson process with the standard population age distribution assumed to be similar to the observed
population age distribution. For aggregated time periods, counts and rates are suppressed for fewer than 16 cases.
However, average annual rates and counts may not be suppressed if the total case count for the time period exceeds 16.
The cell suppression threshold value of 16, which was selected to reduce misuse and misinterpretation of unstable rates
and counts, is more than sufficient to protect patient confidentiality.
Per the Data Use Agreements, researchers using restricted-access data files are required to suppress count and
statistical results that are based on cells with fewer than 6 cases in publications and presentations. Researchers are
advised to use caution when presenting or interpreting results based on fewer than 16 cases.
Complementary cell suppression and suppression of certain race and ethnicity combinations are required as additional
measures to assure patient confidentiality and rate stability.
Public Release Disclosure Statement
The following (or similar) public release disclosure statement is prominently displayed for users of all NPCR-CSS public
web-based query systems, research datasets, and restricted-access datasets:
Data Use Restrictions: Read Carefully Before Using
By using these data, you signify your agreement to comply with the following statutorily based
requirements. The National Program of Cancer Registries (NPCR), Centers for Disease Control and Prevention
(CDC), has obtained an assurance of confidentiality pursuant to Section 308(d) of the Public Health Service Act,
42 U.S.C. 242m(d). This assurance provides that identifiable or potentially identifiable data collected by the NPCR
may be used only for the purpose for which they were obtained unless the person or establishment from which
they were obtained has consented to such use. Any effort to determine the identity of any reported cases, or to
use the information for any purpose other than statistical reporting and analysis, is a violation of the assurance.
Therefore users will:
•
Use the data for statistical reporting and analysis only.
•
Make no attempt to learn the identity of any person or establishment included in these data.
NPCR-CSS 2025 Data Release Policy • Page 12
•
Make no disclosure or other use of the identity of any person or establishment discovered inadvertently,
and advise the Associate Director for Science, Office of Science Policy and Technology Transfer, CDC,
Mailstop D-50, 1600 Clifton Road, N.E., Atlanta, Georgia, 30333, Phone: 404-639-7240 (or NCI’s SEER
Program if SEER data) and the relevant state, territory, or metropolitan area cancer registry of any such
discovery.
Freedom of Information Act (FOIA) Data Requests
The Freedom of Information Act (FOIA) (www.cdc.gov/od/foia/) generally provides that, upon written request from any
person, a federal agency such as CDC must release any agency record unless that record falls (in whole or part) within
one of nine exemptions. FOIA applies to federal agencies only and covers only records in the possession and control of
those agencies at the time of the FOIA request (except in certain instances involving grantee-held data). Because stateand territory-based data become a federal record in CDC’s possession, such records are subject to disclosure in
response to a FOIA request. The FOIA exemptions that may be available to protect some aspects of state and territory
data from public disclosures in response to a FOIA request are:
•
Exemption 3, which specifically exempts information from disclosure by statute; in this instance, pursuant to an
Assurance of Confidentiality under Section 308(d) of the Public Health Service Act.
•
Exemption 6, which exempts from disclosure personnel and medical files and similar files, which would constitute
an unwarranted invasion of personal privacy.
In general, non-FOIA requests to CDC from the public, media, and other government agencies for local cancer incidence
data are referred to the state health department for a reply for three reasons:
1. The state health departments can release cancer incidence data in accordance with local policies and procedures
and consistent with provisions of the Cancer Registries Amendment Act (Public Health Service Act, (42 USC
280e-280e-4), as amended).1
2. The relative infrequency of data submission to federal agencies assures that the state or territory health
department or its designated central cancer registry will have the most complete, accurate, and up-to-date
information.
3. The central registry may be able to provide more detailed data that can better meet the needs of the requestor.
When the request is for data regarding cancer incidence involving more than one state or territory, CDC will refer the
requestor to published reports or to NPCR-CSS datasets that are released in accordance with practices described in this
document, if relevant.
External Data Requests
Individuals, agencies, or organizations outside CDC may request data not available from a public web-based query
system or research dataset. When the requests do not identify a state or territory, CDC staff members or contractors
tabulate the data for the inquirer. For requests that identify a state or territory, CDC staff members may seek states’ or
territories’ permission regarding use. See Appendix N for additional details.
Researchers may submit data query or study proposal requests for the NPCR/SEER USCS Incidence Analytic Dataset to
CDC. These requests must include:
•
•
•
•
Names of individuals who will need access to the data.
Purpose and public health significance of the investigation.
Research question(s).
Variables required beyond those in the freely available research data.
NPCR-CSS 2025 Data Release Policy • Page 13
•
•
Subset of cases needed (specific cancer type, data years, registries).
Planned use of data, such as a manuscript, poster, or presentation.
After CDC authenticates the requestor’s identity and research intent and verifies that confidentiality is maintained, a CDC
analyst will process the data query and provide results to the researcher. The requestor must comply with all
confidentiality and data suppression procedures outlined in the NPCR-CSS Assurance of Confidentiality [308(d)].
In circumstances where the researcher requires access to the USCS Analytic Datasets:
•
•
•
•
CDC staff must be included in the analytic project as a co-author.
Data Use Agreements must be signed.
Assurance of Confidentiality training must be completed.
Access is only allowed on-site at CDC’s Cancer Surveillance Branch offices.
References
1. Cancer Registries Amendment Act, Public Law 102-515, Stat. 3312 (October 22, 1992). Available at
https://www.cdc.gov/cancer/npcr/about.htm#Authorization.
2. Surveillance, Epidemiology, and End Results Program. SEER Program Coding and Staging Manual. Available at:
https://seer.cancer.gov/tools/codingmanuals/.
3. North American Association of Central Cancer Registries. ICD-O-3 Coding Updates. Available at:
https://www.naaccr.org/icdo3/.
4. North American Association of Central Cancer Registries. The Data Standards and Data Dictionary. Available at:
https://apps.naaccr.org/data-dictionary/home.
5. Hofferkamp, J (Ed). Standards for Cancer Registries Volume III: Standards for Completeness, Quality, Analysis,
Management, Security and Confidentiality of Data. Springfield (IL): North American Association of Central Cancer
Registries, August 2008..
6. Hutton MD, Simpson, LD, Miller DS, Weir HK, McDavid K, Hall HI, Progress toward nationwide cancer
surveillance: an evaluation of the National Program of Cancer Registries, 1994–1999. Journal of Registry
Management 2001;28(3):113–120.
7. Centers for Disease Control and Prevention. U.S. Cancer Statistics Publication Criteria. Available at:
https://www.cdc.gov/cancer/uscs/technical_notes/criteria/.
8. NAACCR Method to Estimate Completeness. A Data Analysis Tool for Calculations. Available at:
https://www.naaccr.org/analysis-and-data-improvement-tools/#COMPLETENESS.
9. Clegg LX, Fueur EJ, Midthune DN, Fay MP, Hankey BF. Impact of reporting delay and reporting error on cancer
incidence rates and trends. Journal of the National Cancer Institute 2002;94(20):1537–1545.
10. Centers for Disease Control and Prevention. Cancer Prevention and Control Program for State, Territorial and
Tribal Organizations. Notice of Award, DP22-2202. Available on pages 32-33: Program 3: NPCR, Strategy 1:
Enhance National Program of Cancer Registries (NPCR) data quality, completeness, use, and dissemination;
Data Submission: Submit cancer data to CDC each year in accordance with CDC standards and requirements.
11. Centers for Disease Control and Prevention. CDC/ATSDR Policy on Releasing and Sharing Data. Atlanta:
Centers for Disease Control and Prevention; 2005. Available at https://stacks.cdc.gov/view/cdc/7563.
NPCR-CSS 2025 Data Release Policy • Page 14
12. American Statistical Association. Data Access and Personal Privacy: Appropriate Methods of Disclosure Control.
Alexandria, VA: American Statistical Association; 2008. Available at https://www.amstat.org/asa/files/pdfs/POLDataAccess-PersonalPrivacy.pdf.
13. Doyle P, Lane JI, Theeuwes JM, Zayatz LM (eds). Confidentiality, Disclosure, and Data Access: Theory and
Practical Application for Statistical Agencies. Amsterdam: Elsevier Science BV; 2001.
14. Federal Committee on Statistical Methodology. Checklist on Disclosure Potential of Proposed Data Releases.
Available at https://nces.ed.gov/FCSM/doc/checklist_799.doc.
15. Federal Committee on Statistical Methodology. Report on Statistical Disclosure Limitation Methodology.
(Statistical Working Paper 22). Washington, DC: Office of Management and Budget; 1994 (Revised 2005).
Available at https://nces.ed.gov/FCSM/pdf/spwp22.pdf.
16. McLaughlin C. Confidentiality protection in publicly released central cancer registry data. Journal of Registry
Management 2002; 29(3):84–88.
17. Stoto M. Statistical Issues in Interactive Web-Based Public Health Data Dissemination Systems. Draft report
prepared for the National Association of Public Health Statistics and Information Systems, Rand Corporation;
September 2002.
18. Centers for Disease Control and Prevention. Data Sharing and Collection Principles and Standards; 2024.
Available at https://www.cdc.gov/program-collaboration-service-integration/php/data-security/principles.html.
19. Centers for Disease Control and Prevention. CDC Staff Manual on Confidentiality. Atlanta: Centers for Disease
Control and Prevention; 1984 and National Center for Health Statistics. NCHS Staff Manual on Confidentiality.
Hyattsville, MD: National Center for Health Statistics; 2004.
NPCR-CSS 2025 Data Release Policy • Page 15
Table 1: Comparison of the National Program of Cancer Registries-Cancer
Surveillance System Datasets
Overview
Public Web-Based Query Systems
USCS Data
Visualizations
Tool
Format
Mode of Access
Web Address or
Contact
Information
Contains
Potentially
Identifiable
Information?
1
USCS Data for
Partners 1
NCEH’s Tracking
Network
USCS Public-Use
Research Database
USCS RestrictedAccess Dataset
Database of aggregate
Database of
counts, rates, and other Customized, analytic
aggregate counts and
measures (e.g.,
database. The database
Database of
Database of
Customized,
rates, with text
standardized incidence behind the SEER*Stat
aggregate counts
aggregate counts
analytic database
documentation. The
firewall is case-specific
ratio) with text
and rates, with text
and rates, with text
available through
database behind the
documentation. The microdata with enforced
documentation
documentation
proposal process
cell suppression and
CDC firewall is casedatabase behind the
case listing disabled.
specific microdata.
CDC firewall is casespecific microdata.
Web-based query
system with
downloadable
ASCII files
Web-based query
system
Web-based query
system
Web-based query
system
SEER*Stat client-server
On-site at CDC or
mode only after receipt
through CDC staff
of signed Data Use
assistance
Agreement
National Environmental
Public Health Tracking
Request from
Program
uscsdata@cdc.gov
Website
CDC WONDER
Application process
https://ephtracking.cdc. www.cdc.gov/cancer/pu
www.cdc.gov/cance https://wonder.cdc.go
(specify “USCS
available at
gov/ and
blic-use
County” in subject
r/dataviz
v/cancer.html
www.cdc.gov/rdc
https://ephtracking.cdc.
line)
gov/Applications/melan
omadashboard/
No
Registry Eligibility USCS publication
Criteria for Data
criteria; data meet
Completeness and criteria for unknown
Quality
county
When Available
USCS WONDER
Analytic Datasets
Updated 2026
No
No
No
No
Yes
USCS publication
criteria
USCS publication
criteria; data meet
criteria for unknown
county
USCS publication
criteria; data meet
criteria for unknown
county
USCS publication
criteria
USCS publication
criteria; data meet
criteria for unknown
county
Updated 2026
Updated 2026
Updated 2026
Updated 2026
Updated 2026
This column described data shared with CDC’s Chronic Disease Indicator tool and NCI’s State Cancer Profiles.
NPCR-CSS 2025 Data Release Policy • Page 16
Table 1, continued
Cases Included
Public Web-Based Query Systems
USCS Data
Visualizations
Tool
NCEH’s Tracking
Network
USCS Public-Use
Research Database
USCS RestrictedAccess Dataset
NPCR/SEER states NPCR/SEER states NPCR/SEER states
and territories
and territories
and territories
States/ Territories
meeting USCS
meeting USCS
meeting USCS
publication criteria
publication criteria
publication criteria
NPCR states and
territories meeting
USCS publication
criteria
NPCR/SEER states
and territories meeting
USCS publication
criteria
NPCR/SEER states
and territories
meeting USCS
publication criteria
Individual years
Individual years 1999
1999 through 2023;
through 2023
2018-2023
Individual years 2001
through 2023
Individual years 2001
through 2023
Individual years 1999
through 2023; 2024
preliminary results
All reportable invasive
cancers; in situ female
breast, and benign and
borderline primary
intracranial and central
nervous system tumors
(diagnosis year 2004)
All reportable invasive
and in situ cancers
and benign and
borderline primary
intracranial and
central nervous
system tumors
(diagnosis year 2004)
Diagnosis Years
USCS WONDER
Cancer Sites
All reportable
invasive cancers; in
situ female breast,
in situ male and
female breast, and
benign and
borderline primary
intracranial and
central nervous
system tumors
(diagnosis year
2004)
All reportable
invasive cancers; in
situ female breast, in
situ male and female
breast, and benign
and borderline
primary intracranial
and central nervous
system tumors
(diagnosis year 2004)
USCS Data for
Partners
Analytic Datasets
2017–2023
All reportable
cancer sites
combined; female
breast; in situ
female breast;
cervix uteri; colon
and rectum; lung
and bronchus;
melanoma;
bladder; prostate;
oral cavity and
pharynx; brain and
other nervous
system; thyroid;
kidney and renal
pelvis; stomach;
ovary; corpus and
uterus, not
otherwise specified;
leukemias; nonHodgkin
lymphoma; liver
and intrahepatic
bile duct; pancreas,
esophagus; and
childhood cancers
Same as USCS Data
Visualizations tool
NPCR-CSS 2025 Data Release Policy • Page 17
Table 1, continued
Variables Included
Public Web-Based Query Systems
USCS Data
Visualizations Tool
Geographic
Levels
Race/Ethnicity
Age Groups
All areas combined;
NPCR/SEER state,
territory, congressional
districts, county; SEER
metropolitan area, IHS
regions (AI/AN data only)
(additional levels may be
added)
All races combined, race
groups exclusive of
Hispanic ethnicity (e.g.,
White), race groups
inclusive of Hispanic
ethnicity (e.g., nonHispanic White), ethnic
groups (i.e., Hispanic or
non-Hispanic)
All ages combined and
standard 5-year age
groups and age groups of
<45, 45-54, ≥75 and >65
and ≥65 years for adults.
For childhood cancers age
groups include <15, <20,
and 5-year age groups.
Yes (localized, regional,
Summary Stage distant, and unknown or
unstaged)
Histology
USCS WONDER
USCS Data for
Partners
Analytic Datasets
NCEH’s Tracking
Network
USCS Public-Use
Research Database
All areas combined;
NPCR and SEER
state or territory;
NPCR and SEER
county; region;
state or territory;
MSA for cities of
county
>500,000
population
(additional levels
may be added)
NPCR state or territory;
county/county
equivalent;
sub-county (to include
census tract, 5,000,
20,000, and 50,000
population
aggregations)
All races combined,
race groups
exclusive of
Hispanic ethnicity
(e.g., White), race
groups inclusive of
Hispanic ethnicity
(e.g., non-Hispanic
White), ethnic
groups (i.e.,
Hispanic or nonHispanic)
All races combined,
All races combined,
race groups exclusive
race groups inclusive of
of Hispanic ethnicity
Hispanic ethnicity (e.g.,
(e.g., White), race
non-Hispanic White),
groups inclusive of
ethnic groups (i.e.,
Hispanic ethnicity
Hispanic or non(e.g., non-Hispanic
Hispanic)
White), ethnic groups
Sub-county displayed
(i.e., Hispanic or nonfor all races combined
Hispanic)
All races
combined, race
groups exclusive of
Hispanic ethnicity
(e.g., White), race
groups inclusive of
Hispanic ethnicity
(e.g., non-Hispanic
White), ethnic
groups (i.e.,
Hispanic or nonHispanic)
All areas combined;
U.S. census region;
NPCR and SEER
state or territory
All ages combined
and standard 5year age groups
that can be
combined by the
user
Childhood cancers: <15
Childhood cancers:
All ages combined,
and <20
<15 and <20; all
standard 5-year age
other cancers: <50,
Breast cancer: <50,
groups
50–64, 65+
50+, 40-64
Yes
Yes
International Classification
of Childhood Cancers,
Third Revision based on
ICD-O-3/IARC 2017 (all
geographic areas
combined), mesothelioma
(national and state or
Same as USCS
territory level), Kaposi
Data Visualizations No
sarcoma (national and
tool
state or territory level),
Consensus Conference on
Cancer Registration of
Brain, and central nervous
system tumors (all
geographic areas
combined)
USCS RestrictedAccess Dataset
NPCR and SEER
state or territory;
county for approved
requests only
All races reported;
All races combined,
race groups
exclusive of Hispanic
ethnicity (e.g.,
White), race groups
inclusive of Hispanic
ethnicity (e.g., nonHispanic White),
ethnic groups (i.e.,
Hispanic or nonHispanic)
Standard 5-year age
groups and
individual ages.
Month and day of
birth are not
provided for
confidentiality
reasons. If the age at
diagnosis is >99,
then grouped into
one category. Year
of birth is also
grouped.
Yes (late-stage
screening-amenable
cancers)
Yes
Yes
Same as USCS Data
Visualizations tool
Same as USCS Data
Visualizations tool
Yes
NPCR-CSS 2025 Data Release Policy • Page 18
Table 1, continued
Confidentiality Protection and Disclosure Limitation Measures Employed
Public Web-Based Query Systems
USCS Data for
Partners
No
Analytic Datasets
Tracking Network
USCS Public-Use
Research Database
USCS RestrictedAccess Dataset
No
No
No
Yes, but not in output
which will be
reviewed by CDC
staff for confidentiality
Yes
Yes
Yes; 5-year increments for
county level; 10-year increments
for DCPC melanoma dashboard;
3-, 5-, 7- and 10-year increments
for sub-county level
No
No
Limited Number of
Variables?
Yes
Yes
Yes
Yes
Yes
Grouping or
Collapsing of
Variables or
Response Codes
such as race and
age recode
Yes
No
Yes
Yes
Yes
No
Yes
Yes
No
No
Direct or RecordLevel Identifiers?
USCS Data Visualizations
Tool and USCS WONDER
Aggregation
(1) Average Annual
Counts Rounded to
the Nearest Whole
Number
(2) Average Annual
Rates
(3) Annual Averages
Are Based on At
Least 5 Years of
Data
Cell Suppression
Complementary Cell
Suppression
Yes: Counts and
Yes: Counts and rates: count of
rates: 5-year total
fewer than16
count of <16
Yes: Counts, unsmoothed rates,
and other measures (e.g.,
standardized incidence ratio):
count less than 16 or RSE
Yes: Counts and rates:
greater than the limit (25% for
state or territory and county-level, count of fewer than 16
30% for sub-county level)
enforced, case listing
disabled
Smoothed rates: RSE greater
than the limit (25% for state or
territory and county-level, 30%
for sub-county level)
Yes (output reviewed
by CDC analyst to
ensure counts of
fewer than 6 are
suppressed)
As needed
As needed
As needed
As needed
As needed
Public Release
Disclosure
Statement
Yes
Yes
Yes
Yes
Yes
Data Sharing
Agreement and/or
IRB Approval
No
No
No
Yes
Yes
User Authentication
No
No
No
No
Yes
Logging and
Monitoring
Limited
Limited
Limited
NPCR-CSS 2025 Data Release Policy • Page 19
Yes, monitoring
databases used,
session type and date
only
Yes
Appendix A: State, Territory, and Metro Area Cancer Registries
State, Territory, and Metro Area Cancer Registries by Federal Funding Source, and First Diagnosis Year* for which
cancer cases were reportable to CDC’s NPCR or NCI’s SEER Program
First Diagnosis Year for Which Cancer Cases
Were Reportable to NPCR or SEER*
Federal Funding
Source
Alabama
1996
NPCR
Alaska
1996
NPCR
Arizona
1995
NPCR
Arkansas**
1996
NPCR
1995/2000
NPCR and SEER
Los Angeles
1992
SEER
San Francisco-Oakland
1973
SEER
San Jose-Monterey
1992
SEER
Colorado**
1995
NPCR
Connecticut
1973
SEER
Delaware
1997
NPCR
District of Columbia
1996
NPCR
Florida
1995
NPCR
Georgia
1995/2010
NPCR and SEER
1975
SEER
Hawaii
1973
SEER
Idaho
1995/2018
NPCR and SEER
Illinois
1995/2022
NPCR and SEER
Indiana
1995
NPCR
Iowa
1973
SEER
Kansas
1995
NPCR
Kentucky
1995/2000
NPCR and SEER
Louisiana
1995/2000
NPCR and SEER
Maine
1995
NPCR
Maryland
1996
NPCR
Massachusetts
1995
NPCR
Michigan**
1995
NPCR
Minnesota
1995
NPCR
Mississippi
1996
NPCR
Missouri**
1996
NPCR
Montana
1995
NPCR
Nebraska
1995
NPCR
Nevada
1995
NPCR
New Hampshire**
1995
NPCR
State or Territory
California
Atlanta
NPCR-CSS 2025 Data Release Policy • Page 20
First Diagnosis Year for Which Cancer Cases
Were Reportable to NPCR or SEER*
Federal Funding
Source
New Jersey
1995/2000
NPCR and SEER
New Mexico
1973
SEER
1996/2018
NPCR and SEER
North Carolina
1995
NPCR
North Dakota
1997
NPCR
Ohio
1996
NPCR
Oklahoma
1997
NPCR
Oregon**
1996
NPCR
Pennsylvania
1995
NPCR
Puerto Rico
1998
NPCR
Rhode Island
1995
NPCR
South Carolina
1996
NPCR
South Dakota
2000
NPCR
Tennessee**
1999
NPCR
1995/2022
NPCR and SEER
2007
NPCR
1973/2016
SEER and NPCR
Vermont
1996
NPCR
Virginia
1996
NPCR
Virgin Islands
2016
NPCR
Washington
1995
NPCR
1975
SEER
West Virginia
1995
NPCR
Wisconsin**
1995
NPCR and SEER
Wyoming
1996
NPCR
State or Territory
New York
Texas
U.S. Pacific Island Jurisdictions
Utah
Seattle-Puget Sound
* Diagnosis year is the year during which a reported cancer case was first diagnosed.
** Arkansas, Colorado, Michigan, Missouri, New Hampshire, Oregon, Tennessee, and Wisconsin receive research
support from SEER but are not under contract to submit data.
CDC = Centers for Disease Control and Prevention
NCI = National Cancer Institute
NPCR = National Program of Cancer Registries
SEER = Surveillance, Epidemiology, and End Results Program
NPCR-CSS 2025 Data Release Policy • Page 21
Appendix B: NPCR-CSS Overview of Data Security
The NPCR-CSS project data reside on a dedicated server maintained by the NPCR-CSS contractor. To ensure the
security and confidentiality of project data, the following provisions have been incorporated into the NPCR-CSS Security
Plan in accordance with the requirements of the Assurance of Confidentiality.
The NPCR-CSS server is housed in a secure facility with a guard on duty 24 hours a day. Only authorized staff are
allowed to access the facility. Support people are escorted by an authorized staff member if needed. The server resides
on its own local area network (LAN) behind the NPCR-CSS contractor’s firewall. NPCR-CSS contractor project staff
access the server via a virtual private network (VPN) from their primary office location. Elevator and stairwell access is
controlled by card key 24 hours. During business hours, an attendant is always present at the reception desk to guide
visitors.
•
Access to the NPCR-CSS server is limited to authorized NPCR-CSS contractor project staff. It is passwordprotected on its own security domain. No one else is allowed access to the NPCR-CSS data.
•
All NPCR-CSS contractor project staff must sign a confidentiality agreement before passwords and keys are
assigned. All staff must pass background checks appropriate to their responsibilities for a public trust position.
•
NPCR-CSS data that are submitted electronically are encrypted during transmission from the States. They arrive
on a document server behind the NPCR-CSS contractor’s firewall. Each state or territory has its own directory
location so that no state or territory has access to another state or territory’s data. The data are moved
automatically from the document server to the NPCR-CSS server.
•
Receipt and processing logs are maintained to document data receipt, file processing, and report production. All
reports and electronic storage media containing NPCR-CSS data are stored under lock and key when not in use
and will be destroyed when they are no longer needed.
•
The NPCR-CSS contractor’s security team has developed a comprehensive security plan. The security team
consists of the Project Director, Project Manager, Systems Lead and Security Officer, Database Administrator,
and LAN/WAN Security Steward. All project staff receive annual security awareness training covering security
procedures. The security team oversees operations to prevent unauthorized disclosure of the NPCR-CSS data.
•
Periodic (currently quarterly, but at least once per year) reviews and updates of the NPCR-CSS contractor’s
security processes are conducted to adjust for rapid changes in computer technology and to incorporate
advances in security approaches. The security plan is amended as needed to maintain the continued security and
confidentiality of NPCR-CSS data.
NPCR-CSS 2025 Data Release Policy • Page 22
Appendix C: Data Items for CBTRUS
The dataset for CBTRUS includes individual case-specific data from the NPCR-CSS dataset. The data items included are
listed below.
Diagnosis years 1995 through 2003 include invasive cases only. Starting with cases diagnosed in 2004, invasive, benign,
and borderline cases are included.
NAACCR Data Item
Number
Item Name
Patient ID
20
NAACCR Record Version
50
State of Residence at Diagnosis
80
County at Diagnosis—Analysis
Rural/Urban Continuum/Beale Code 2013
89
Comments
Results presented as 5-year average
annual rates as the smallest time period
with <16 cell and complementary cell
suppression required
3312
Derived based on
Same as race for USCS
[160], [161], and [192]
NPCR Race Recode
Results of NAACCR Hispanic/Latino
Identification Algorithm
NHIA Derived Hispanic Origin
191
NAPIIA
193
Sex
220
Age at Diagnosis
230
Sequence Number—Central
380
Date of Diagnosis
390
Day and month of diagnosis not
included, only year provided
Date of Diagnosis
390
Full date
Primary Site
400
Laterality
410
Grade
440
Diagnostic Confirmation
490
Type of Reporting Source
500
Histologic Type (ICD-O-3)
522
Behavior (ICD-O-3)
523
Summary Stage 2018
764
SEER Summary Stage 2000
759
Derived Summary Stage 2000
3020
Single year up to age 84; 85+ grouped
into one category
Derived based on
[764], [759], [3020]
Merged Summary Stage
NPCR Cancer Stage
Based on 759 and 3020
RX Summ--Surgery Primary Site
1290
≥2010 diagnosis years
NPCR-CSS 2025 Data Release Policy • Page 23
NAACCR Data Item
Number
Item Name
Comments
Reason for no surgery
1340
≥2010 diagnosis years
RX Summ—Radiation
1360
≥2010 diagnosis years
RX Summ--Chemo
1390
≥2010 diagnosis years
RX Summ--BRM
1410
≥2010 diagnosis years
Rad–Regional RX Modality
1570
≥2010 diagnosis years
Based on 1360 and 1570
1 = had radiation
2 = did not have radiation
3 = patient or guardian refused
radiation
4 = radiation recommended but
unknown if received
Merged Radiation
Applied only for selection below:
8000≤I522_HistTypeICDO3≤9049 |
9056≤I522_HistTypeICDO3≤9139 |
9141≤I522_HistTypeICDO3≤9589
EDITS overrides
1990–2074
CS Site-Specific Factor 1
2880
Date of Last Contact
1750
Vital Status
1760
Vital Status Recode
1762
Record Number Recode
1775
Surv-Date Active Followup
1782
Surv-Flag Active Followup
1783
Survival Months Active Followup
1784
Surv-Date Presumed Alive
1785
Surv-Flag Presumed Alive
1786
Survival Months Presumed Alive
1787
Surv-Date Dx Recode
1788
Follow-Up Source
1790
Follow-Up Source Central
1791
Cause of Death
1910
SEER Cause-Specific COD
1914
SEER Other COD
1915
ICD Revision Number
1920
Brain Molecular Markers
3816
Site Recode ICD-O-3/WHO 2008
9410
ICCC site recode 3rd edition/IARC 2017
9420
ICCC site recode extended 3rd
edition/IARC 2017
9422
WHO Grade
Diagnosis years 2001–2019 for states
included in the NPCR RSA file. Cause
of Death items (1910, 1914, 1915) are
not included when review has
determined that high-quality cause of
death information is not available for
specific states or territories.
NPCR-CSS 2025 Data Release Policy • Page 24
NAACCR Data Item
Number
Item Name
AYA Site Recode 2020
9445
SEER Brain/CNS Site Recode
9455
NPCR-CSS 2025 Data Release Policy • Page 25
Comments
Appendix D: NPCR/SEER USCS Analytic Data Use Agreement
U.S Cancer Statistics Analytic Data
Submitted [Month,Year] (diagnosis years 1998–xxxx)
To protect the confidentiality of the individuals represented within the National Program of Cancer Registries – Cancer
Surveillance System (NPCR-CSS) data, the Centers for Disease Control and Prevention (CDC) has obtained an Assurance
of Confidentiality under Section 308(d) of the Public Health Service Act (42 U.S.C. 242m(d)), which provides that these data
can only be used for the purpose for which they were obtained.
When using NPCR and U.S. Cancer Statistics analytic data for research purposes, it is necessary to ensure, to the extent
possible, that use of the data will be limited to research or public health purposes. In accordance with applicable federal
law, there must be no attempt to determine the identity of individuals represented by reported cases, or to use the information
for any purpose other than for health statistical reporting and analysis.
CDC’s Division of Cancer Prevention and Control (DCPC) takes every possible measure to ensure that the identity of data
subjects cannot be determined. All direct identifiers, as well as characteristics that might lead to identification of
individuals, are omitted from the dataset. Certain demographic and clinical information has been included for research
purposes; thus, all results must be presented or published in a manner that ensures that no individual can be identified. In
addition, there must be no attempt to identify individuals from any computer file or to link with a computer file containing
patient identifiers.
Data users must agree to the following provisions before receiving access to U.S. Cancer Statistics Incidence, U.S.
Cancer Statistics Delay-Adjusted, NPCR Prevalence, and/or NPCR Survival Analytic Data. Please initial after each
statement to indicate agreement.
As the recipient of the U.S. Cancer Statistics Incidence (diagnosis years {year}–{year}), U.S. Cancer Statistics
Delay-Adjusted (diagnosis years {year}–{year}), NPCR Prevalence (diagnosis years {year}–{year}), and/or NPCR
Survival Analytic Data (diagnosis years {year}–{year}):
•
I will adhere to the requirements of the Data Use Agreement and understand that my access to the data will be
revoked if these requirements are violated. Initials: ______
•
I understand that NPCR data belong to the states and territories. The states’ and territories’ agreement to use of
the data are obtained through the activities outlined in the general NPCR-CSS Data Release Policy and by
specific requests to the states and territories through the management team of DCPC’s Cancer Surveillance
Branch. Initials: ______
•
I will not use or permit others to use the datasets in any way other than for statistical reporting and analysis.
Initials: ______
•
I will not release or permit others to release the datasets or any part of them to any person except with DCPC’s
written approval. Initials: ______
•
I will not attempt to link or permit others to link the datasets with individually identifiable records from any other
dataset without DCPC’s approval. Initials: ______
•
I will not access nor permit others to access (directly or remotely) the data outside the United States.
Initials: ______
•
I will not attempt to use the datasets or permit others to use them to learn the identity of any person or
establishment included in any dataset. Initials: ______
NPCR-CSS 2025 Data Release Policy • Page 26
•
I will protect the data file(s) I receive with a password and/or encryption. In addition, any temporary or permanent
analysis files, such as those produced with analytic software, will be protected in the same manner(s).
Initials: ______
•
I will take the following actions if the identity of any person or establishment is discovered inadvertently:
o
o
o
o
•
Make no use of this knowledge.
Notify DCPC’s Internal Data Users Group by emailing npcridug@cdc.gov.
As requested by DCPC, safeguard or destroy the information that identifies an individual or establishment.
Inform no one else of the discovered identity. Initials: ______
In addition, I will make every effort to release all statistical information in such a way as to avoid inadvertent
disclosure. In order to do this:
o
I agree that all oral or written reports will contain only aggregate data and I will not report counts of fewer than
6 cases or statistics generated from fewer than 6 cases. Initials: ______
o
I understand that calculating rates or other statistics based on small numbers can raise statistical issues
concerning stability and confidentiality. I will use appropriate caution when presenting and interpreting results
based on fewer than 16 cases. Initials: ______
o
I will use complementary cell suppression to ensure that no data on an identifiable case can be derived
through subtraction or other calculation from the combination of tables in all oral and written presentations.
Initials: ______
•
I have completed the Assurance of Confidentiality Overview Course
(https://intranet.cdc.gov/os/osi/pcu/aoc/training/) available through HHS Learning Portal and have e-mailed my
certificate of completion to npcridug@cdc.gov. Initials: ______
•
I have added my project to the NPCR Internal Analysis SharePoint table and, if applicable, I will notify and obtain
permission from the Internal Data Users Group to analyze state- and county-level data. Initials: ______
•
I will acknowledge central cancer registries whenever data are presented, released, or published by including the
following (or similar) statement:
These data were provided by central cancer registries participating in the National Program of Cancer
Registries (NPCR) and submitted to CDC in November {year}, and/or the Surveillance, Epidemiology and
End Results (SEER) program and submitted to NCI in November {year}. The U.S. Cancer Statistics
Incidence Analytic dataset includes diagnosis years {year}–{year} (excluding SEER-Metro Registry data);
U.S. Cancer Statistics Delay Adjusted Analytic dataset includes diagnosis years {year}–{year} (excluding
SEER-Metro Registry data), NPCR Prevalence Analytic dataset includes diagnosis years {year}–{year}
and the NPCR Survival Analytic dataset includes diagnosis years {year}–{year}. Initials: ______
•
As appropriate, I will cite the data:
National Program of Cancer Registries SEER*Stat Database: {Database file name} – {year}–{year}.
United States Department of Health and Human Services, Centers for Disease Control and Prevention.
Released {date}, based on the {year} submission. Initials: ______
•
I understand that if I require technical assistance in analyzing or interpreting the data and when such assistance
goes beyond providing non-manipulated data, IDUG members reserve the right to request to be considered as a
research collaborator or co-author in any resulting publications or presentations. Initials: ______
•
I will provide a courtesy copy of papers or abstracts to the NPCR Internal Data Users Group at npcridug@cdc.gov
as they are entered into Documentum for clearance. Initials: ______
•
I am familiar with the use of SEER*Stat in analyzing data or will complete the needed training. Initials: ______
NPCR-CSS 2025 Data Release Policy • Page 27
If you are requesting access to a U.S. Cancer Statistics database, you must first set-up SEER Research Plus
(https://seer.cancer.gov/data/access.html) access as the database includes SEER data.
After you have access to SEER Research Plus, complete the fields below, sign and date the agreement, and email all pages to npcridug@cdc.gov.
The e-mail address you provide must be the same one used during the SEER Research Plus verification process.
My signature below indicates that I agree to comply with all the above stated provisions.
__________________________________________________________________
Signature
Date
Name:____________________________________________________________
Title______________________________________________________________
Branch____________________________________________________________
Telephone____________________
E-mail:_______________________
NPCR-CSS 2025 Data Release Policy • Page 28
Appendix E: CDC Non-Disclosure Agreement
Nondisclosure Agreement for Data Covered by an Assurance of Confidentiality
For use with CDC employees involved in activities with information covered by a Section 308(d) Assurance of
Confidentiality
The success of CDC's operations depends upon the voluntary cooperation of establishments, including States, and of
persons who provide information requested by CDC programs under an assurance that such information will be kept
confidential and be used only for epidemiological or statistical purposes.
When confidentiality is authorized, CDC operates under the restrictions of Section 308(d) of the Public Health Service Act
(42 U.S.C. §242m(d)), which provides in summary that no information obtained in the course of its activities may be used
for any purpose other than the purpose for which it was supplied, and that such information may not be published or
released in a manner in which the establishment or person supplying the information or described in it is identifiable
unless such establishment or person has consented. As a CDC employee granted access to information covered by
Section 308(d), I understand and acknowledge that I am bound to comply with the restrictions provided to the information
under Section 308(d).
I am aware that unauthorized disclosure of information covered by Section 308(d) of the Public Health Service Act may
subject me to disciplinary action.
''I am aware that unauthorized disclosure of confidential information is punishable under Title 18, Section 1905 of the U.S.
Code, which reads, in relevant part:
'Whoever, being an officer or employee of the United States or of any department or agency thereof…publishes, divulges,
discloses, or makes known in any manner or to any extent not authorized by law any information coming to him in the
course of his employment or official duties or by reason of any examination or investigation made by, or return, report or
record made to or filed with, such department or agency or officer or employee thereof, which information concerns or
relates to the trade secrets, processes, operations, style of work, or apparatus, or to the identity, confidential statistical
data, amount or source of any income, profits, losses, or expenditures of any person, firm, partnership, corporation, or
association; or permits any income return or copy thereof or any book containing any abstract or particulars thereof to be
seen or examined by any person except as provided by law; shall be fined not more than $1,000, or imprisoned not more
than one year, or both; and shall be removed from office or employment.'
''I understand that unauthorized disclosure of confidential information is also punishable under the Privacy Act of 1974,
Subsection 552a (i) (1), which reads:
'Any officer or employee of any agency, who by virtue of his employment or official position, has possession of, or access
to, agency records which contain individually identifiable information the disclosure of which is prohibited by this section or
by rules or regulations established thereunder, and who knowing that disclosure of the specific material is so prohibited,
willfully discloses the material in any manner to any person or agency not entitled to receive it, shall be guilty of a
misdemeanor and fined not more than $5,000.'
These provisions are consistent with and do not supersede, conflict with, or otherwise alter the employee obligations,
rights, or liabilities created by existing statute or Executive order relating to (1) classified information, (2) communications
to Congress, (3) the reporting to an Inspector General of a violation of any law, rule, or regulation, or mismanagement, a
gross waste of funds, an abuse of authority, or a substantial and specific danger to public health or safety, or (4) any other
whistleblower protection. The definitions, requirements, obligations, rights, sanctions, and liabilities created by controlling
Executive orders and statutory provisions are incorporated into this agreement and are controlling.
'My signature below indicates that I have read, understood, and agreed to comply with the above statements.
______________________________________
Typed/Printed Name
__________________________________
Signature
______________________________________
Center/Institute/Office
NPCR-CSS 2025 Data Release Policy • Page 29
_______________
Date
Non-Employee 308(d) Pledge of Confidentiality
For use when non-CDC employees are provided access to data covered by a 308(d) Assurance of Confidentiality
I, as a non-CDC Employee (e.g., Guest Researcher, Visiting Fellow, Student, Trainee, employee of a federal agency other
than CDC, etc.) may be given access to information that is identifiable or potentially identifiable to a person and that is
covered by Section 308(d) of the Public Health Service Act (42 U.S.C. §242m(d)), or an Assurance of Confidentiality. As a
condition of this access, I am required to comply with the following safeguards for the protection of this covered data.
1. I agree to be bound by the following assurance:
In accordance with Section 308(d) of the Public Health Service Act (42 U.S.C. §242m(d)), I agree that no
information obtained in the course of the activity described in the Assurance of Confidentiality will be used for any
purpose other than the purpose for which it was supplied, unless I am informed in writing that such person has
consented to its use for such other purposes. Further, I agree that no information obtained in the course of the
activity described in the Assurance of Confidentiality will be disclosed in a manner in which the establishment or
person supplying the information or described in it is identifiable, unless I am informed in writing that the
establishment or person has consented to such disclosure, to anyone other than authorized staff of CDC or staff
covered under this 308(d) Assurance.
2. I agree to maintain the following safeguards to assure that confidentiality is protected and to provide for the
physical security of the records:
To preclude observation of confidential information by persons not authorized to have access to the information
on the project, I shall maintain all records that I am provided access to that identify establishments or persons
covered by this Assurance of Confidentiality or from which establishments or persons covered by this Assurance
of Confidentiality could be identified in locked containers or protected computer files when not under immediate
supervision by me or another authorized member of the project. The keys or means of access to these containers
or files are not to be given to anyone other than those authorized to have access. I further agree to abide by any
additional requirements imposed by CDC for safeguarding the identity of establishments or persons covered by
this Assurance of Confidentiality.
My signature below indicates that I have carefully read and understand this agreement and the Assurance of
Confidentiality, which pertains to the confidential nature of this project. As a(n) _________________________ (for
example, visiting scientist, guest researcher, fellow, trainee, employee of a federal agency other than CDC), I understand
that I am prohibited from disclosing any such confidential information that has been obtained under this project to anyone
other than authorized staff of CDC or persons covered under this Section308(d) Assurance of Confidentiality. I understand
that any disclosure in violation of this Confidentiality Pledge may lead to termination of my employment, fellowship,
training experience, or scientific collaboration, as well as other penalties.
_______________________________________
Printed Name
_______________________________________
Signature
_______________________________________
Date
NPCR-CSS 2025 Data Release Policy • Page 30
Agreement of CDC Contractors for Safeguards Against Invasions of Privacy for Certain
Establishments or Persons Covered by an Assurance of Confidentiality
For use when contractors or subcontracts have access to information covered by a 308(d) Assurance of Confidentiality
Access to data covered by an Assurance of Confidentially, titled Assurance of Confidentiality for the National Program of
Cancer Registries Cancer Surveillance System, (“Assurance”) as provided by Section 308(d) of the Public Health Service
Act (42 U.S.C. §242m(d)), is necessary for certain projects funded through contract task order number
______________________. Consistent with Section 308(d), the contractor is required to give an assurance of
confidentiality and to provide for safeguards to assure that confidentiality of the data covered by the Assurance is
maintained.
To provide this assurance and these safeguards in performance of the contract, the contractor shall
1. Be bound by the following assurances:
a. No information that is identifiable or potentially identifiable to an establishment or person covered by the
Assurance and obtained in the course of this activity may be used for any purpose other than the purpose for
which it was supplied, unless CDC informs contractor in writing that such establishment or person has consented
to its use for such other purposes.
b. No information that is identifiable or potentially identifiable to an establishment or person covered by the
Assurance and obtained in the course of this activity may be disclosed to anyone other than authorized staff of
CDC or others noted in the Assurance, unless CDC informs contractor in writing that such establishment or
person has consented to its disclosure to such other persons.
c. No preliminary data from studies or projects that identifies or potentially identifies an establishment or person
covered by the Assurance may be disclosed to anyone other than authorized staff of CDC or others noted in the
Assurance of Confidentiality statement, unless this information is otherwise in the public domain or CDC has
provided written permission for use of this information to be made public. For example, if CDC clears an abstract
for a scientific presentation, this constitutes permission for public presentation.
d. New research study ideas that are not already funded through the above-referenced contract task order may be
discussed or presented during calls/meetings as part of normal communications and coordination between CDC
and the contractor; should these ideas lead to further activities with information covered by this Assurance, these
protections will extend to those activities only if agreed to in writing by CDC.
2. Maintain the following safeguards to assure that the confidentiality provided by Section 308(d) and the Assurance is
protected by the contractor and to provide for the physical security of the records:
a. After having read the above Assurance, each employee of the contractor participating in this project is to sign the
following pledge of confidentiality:
I have carefully read and understand the CDC assurance, which pertains to the confidential nature of identifiable
or potentially identifiable data covered by the Assurance of Confidentiality to be handled in regard to these studies
and reviewed as part of activities under task order _____________________. As an employee of the contractor, I
understand that I am prohibited by law from disclosing any such confidential information that identifies or
potentially identifies an establishment or person covered by the Assurance of Confidentiality, which has been
obtained under the terms of this contract, to anyone other than authorized staff of CDC and that I may use this
information only for the purposes for which it was obtained and consistent with the task order.
b. To preclude observation of confidential information that identifies or potentially identifies an establishment or
person covered by the Assurance by persons not employed on the project, the contractor shall maintain all
NPCR-CSS 2025 Data Release Policy • Page 31
confidential records that identify establishments or persons or from which establishments or persons could be
identified under lock and key.
Specifically, at each site where these items are processed or maintained, all confidential records that will permit
identification of establishments or persons are to be kept in locked containers when not in use by the contractor’s
employees. The keys or means of access to these containers are to be held by a limited number of the contractor
staff at each site. When confidential records that will permit identification of establishments or persons are being
used in a room, admittance to the room is to be restricted to employees pledged to confidentiality and employed
on this project. If at any time the contractor’s employees are absent from the room, it is to be locked.
c.
The contractor and his professional staff will take steps to insure that the intent of the pledge of confidentiality is
enforced at all times through appropriate qualifications standards for all personnel working on this project and
through adequate training and periodic follow-up procedures.
3. Flow down all requirements set forth in this Agreement to all subcontracts and all subcontract employees.
__________________________________
(Typed/printed Name)
__________________________________
(Signature)
_________________________________
(Date)
NPCR-CSS 2025 Data Release Policy • Page 32
CONFIDENTIALITY AGREEMENT for Access to Information Technology Resources at the
Centers for Disease Control and Prevention and Limitation on Disclosure of Sensitive
Information Under
Contract Number ______________, Task Order __________
As an employee or subcontractor of ______________________, THE PARTICIPANT requires a wide range of access to
confidential information and Federal information technology (IT) resources and information maintained by the Centers for
Disease Control and Prevention (CDC), an agency of the U.S. Department of Health and Human Services.
In consideration for the following mutual covenants, the parties agree as follows:
1. Within the context of CDC Contract Number _________________, Task Order _________, and in accordance with
the terms of this agreement, CDC grants limited access to the following:
a. The Federal information technology (IT) resources generally described in Table 1.
b. Datasets and/or public use data tapes derived from information collected under an Assurance of Confidentiality
authorized by Section 308(d) of the Public Health Service Act, also listed in Table 1.
2. THE PARTICIPANT acknowledges that within the CDC environment, a variety of restricted access information is held,
the vast bulk of which is categorized as “Sensitive but Unclassified”, and that in the performance of CDC Contract
Number _________________, Task Order _________, the participant may require access to such limited access
information. Categories of limited access information include the following:
•
•
•
•
•
•
•
•
•
Health & health-related data on individuals, groups, entities, some of which identify individuals
Federal Privacy Act “systems of records”
Information exempted from release under Freedom of Information Act
Proprietary data
National Defense-related information
Information subject to contractual restrictions on access
Information covered by a Certificate or Assurance of Confidentiality [P.H.S. Act, Sects. 301(d) & 308(d)]
Data collected under other specific legislative mandates (i.e. tobacco, transfer of biological, etc.)
Data identified as pre-release, internal working papers, etc., of federal agency
Therefore, THE PARTICIPANT further agrees to not attempt to identify any person contained in contract data and to
make no use of the identity of any person or establishment discovered inadvertently and advise CDC of any such
discovery.
3. THE PARTICIPANT acknowledges the sensitive and confidential nature of the information covered by this agreement
and agrees to employ all reasonable efforts to maintain such information secret and confidential, such efforts to be no
less than the degree of care employed by ICF Incorporated to preserve and safeguard ICF Incorporated’s own
information.
4. THE PARTICIPANT agrees to utilize any information accessed through the performance of CDC Contract Number
_________________, Task Order _________ solely for the purpose of performing that Contract;
5. THE PARTICIPANT has read and agrees to be bound by CDC policies and standards regarding confidentiality and
use of Federal IT resources. Further, THE PARTICIPANT agrees to attend one hour of training by CDC on
information security and the use of IT resources at CDC.
6. THE PARTICIPANT agrees to refrain from any of the following prohibited uses:
a. Disclosing, revealing, or giving to anyone information accessed under CDC Contract Number
_________________, Task Order _________ except to employees of ICF Incorporated who have a need for the
NPCR-CSS 2025 Data Release Policy • Page 33
information and who are bound to it by like obligation as to confidentiality, without the express written permission
of CDC.
b. Attempting to override or avoid security and integrity procedures and devices established by CDC, or its
components, to control access to federal IT resources.
c.
Attempting to override or avoid security and integrity procedures and devices established by outside organizations
to control access to their information systems and IT resources.
d. Using hardware and/or software or downloading software within the scope of the project that is not specifically
authorized in writing by the Project Officer.
e. Violating copyrights or software licensing agreements.
f.
Using CDC’s name or logos to misrepresent, as falling under CDC auspices, personal materials, or materials one
produces on behalf of an approved group.
7. Upon expiration of this Agreement or CDC Contract Number _________________, Task Order _________, THE
PARTICIPANT agrees to destroy or return to CDC any information accessed through the performance of contract that
falls under one or more of the categories listed under paragraph 2 above and that was copied, printed, or otherwise
duplicated.
8. CDC has the capability and the authority to audit its federal IT resources, and under appropriate circumstances,
monitor their use.
9. CDC may terminate this access with or without cause at any time without advance notice.
10. THE PARTICIPANT’S authorized access automatically expires at the end of the contract period, or sooner if so
indicated in the space at the top of Table 1. A written renewal request must be submitted two months prior to the
termination, with appropriate justification for each access to be continued. A new Agreement for Access and Limitation
on Disclosure is required for each renewal.
11. The construction, interpretation, and performance of this Agreement shall be governed by U.S. Federal law.
Violations of this agreement or misuse of CDC’s federal IT resources may subject THE PARTICIPANT to criminal
penalties in accordance with Federal law (attached). In addition, THE PARTICIPANT understands that other Federal
laws and regulations govern CDC’s maintenance and operation of these Federal IT resources and may apply to THE
PARTICIPANT.
12. I have read, understood, and agree to comply with the above statements.
_______________________________________________
Print Name: Last, First, Middle Initial
(Person Requesting Access)
____________________________________________
Print Name: Last, First, Middle Initial
(Contractor’s Official Witness)
_______________________________________________
Position
____________________________________________
Position
_______________________________________________
Signature
____________________________________________
Signature
_______________________________________________
Date (month, day, and year)
____________________________________________
Date (month, day, and year)
NPCR-CSS 2025 Data Release Policy • Page 34
CDC Point of Contact (Technical Monitor or Project Officer):
_______________________________________________
Print Name: Last, First, Middle Initial
____________________________________________
Position
_______________________________________________
Signature
____________________________________________
Date (month, day, and year)
Copies of the following CDC policy statements are to be provided to each person requesting access.
Laws, Policies and Procedures Governing Use of Electronic Mail, Intranet, Internet and Other
Information Technology (IT) ADP Security Policy (Manual Guide-Information Resources
Management, No. CDC-3, 3/15/89) 18 U.S.C. Sections 641 and 1030.
Table 1 Federal Information Resources Authorized
Federal IT Resource Name or Description
Location
Authorizing Official(s)
Main point of entry to CDC IT resources:
Information Resources Management Office
None authorized
Other LAN account(s)
None authorized
CDC mainframe account
None authorized
CDC e-mail account
None authorized
Internet access
None authorized
CDC Intranet access
None authorized
Cancer incidence data from awardees funded
by CDC’s Program Announcement DP22-2202
for a cooperative agreement under for the
National Program of Cancer Registries
CDC Contracting Officer’s
Representative
CDC Project Officer
Mortality data from the National Center for
Health Statistics (NCHS)1
NCHS
Population data from the U.S. Census Bureau
Data publicly available on
Internet
By signing this agreement, THE PARTICIANT agrees to abide by the conditions stipulated by NCHS in the NCHS Data
Use Agreement.
1
Access to a specific resource does not imply access to any other resource.
NPCR-CSS 2025 Data Release Policy • Page 35
Appendix 1
Access to additional resources may be granted upon written request, as described below.
A written request shall be provided to ______________________________, who will forward the request with a statement
of support of the justification provided, to _______________________, the CDC Contracting Officer’s Representative
(COR) for Contract Number _________________, Task Order _________ in the __________________ Branch, Centers
for Disease Control and Prevention (CDC).
If the requested access involves a physically separate or limited-access device or dataset, the appropriate steward of that
device or dataset shall be provided with a copy of the request for review and authorization.
Upon acceptance of the request by all appropriate parties, an amendment to the Agreement for Access and Limitation on
Disclosure will be executed, and a copy of any appropriate limitations on access and use will be provided. When this has
been done, access will be provided.
If effective access not contained in table 1 is recognized, or if another relationship is established with a CDC organization
that may lead to additional access to federal IT resources at CDC, written notice of such shall be provided to
____________________________, and _____________________, the CDC COR for Contract Number
_________________, Task Order _________ _______________ Branch, CDC.
NPCR-CSS 2025 Data Release Policy • Page 36
Appendix F: Data Items for NPCR/SEER USCS Incidence Analytic Dataset
SEER*Stat Category
Age at Diagnosis
SEER*Stat Variable Name
Restrictions
Age recode with <1 year olds
Sex
Year of diagnosis
Addr at DX – state
County at DX Analysis
Kansas data unavailable
State-county
Kansas data unavailable
USCS standard
USCS9823
USCS9923
Race, Sex, Year Dx,
Registry, County
USCS1423
USCS1923
Race recode (W, B, AI, API)
Program
Econ status
Derived based on Appalachian Regional
Commission definition
Region/Division
Region
Origin recode NHIA (Hispanic, Non-Hisp)
Race and origin recode (NHW, NHB, NHAIAN,
NHAPI, Hispanic)
Site and Morphology
Primary Site – labeled
Primary Site
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Grade
Grade clinical
Grade pathological
Grade post therapy
Diagnostic confirmation
ICD-O-3 Hist/behavior, labeled
ICD-O-3 Hist/behavior, malig, labeled
Site recode ICD-O-3/WHO 2008
ICCC site recode 3rd ed ICD-O-3/IARC 2017
ICCC site rec extended 3rd ed ICD-O-3/IARC 2017
AYA site recode 2020
Lymphoid neoplasm recode 2021 revision
Schema ID
NPCR-CSS 2025 Data Release Policy • Page 37
SEER*Stat Category
SEER*Stat Variable Name
Restrictions
Behavior recode for analysis derived/WHO2008
Derived SS2000
SEER Summary Stage 2000
Stage – LRD [Summary
SEER Summary Stage 1977
and Historic]
SEER Summary Stage 2018
Merged Summary Stage
Therapy
Extent of Disease
RX summ – surg prim site
Diagnosis years ≥2003
RX summ – chemo
Female and male breast only, diagnosis
years ≥2010, and NPCR CCRs† only
Phase I Radiation Treatment Modality
Female and male breast and colorectal
only, diagnosis years ≥2018
Merged radiation
Female and male breast and colorectal
only, diagnosis years ≥2010, and NPCR
CCRs only
CS site-specific factor 1
Brain and other CNS and diagnosis years
2011–2017
Merged estrogen receptor
Female and male, Schema ID=breast (or
equivalence site/histology) and diagnosis
years ≥2004
Merged progesterone receptor
Female and male, Schema ID=breast (or
equivalence site/histology) and diagnosis
years ≥2004
Merged HER2 receptor
Female and male, Schema ID=breast (or
equivalence site/histology) and diagnosis
years ≥2010
Laterality
Multiple Primary Fields
Race and Age (case
data only)
Geographic Locations
Sequence number - central
Age at Diagnosis
Race 1
IHS Link
Ruralurban continuum 2013
Census Tract Poverty Indicator
Dates
Diagnosis years ≥2014, NPCR CCRs only
Year of Birth
Month of diagnosis
Other
Type of Reporting Source
Alcohol-related cancers
HPV-related cancers
Merged SystemSupplied
Obesity-related cancers
Physical inactivity-related cancers
Tobacco-related cancers
State race eth suppress
NPCR-CSS 2025 Data Release Policy • Page 38
Appendix G: Data Items for NPCR Internal Survival and Prevalence Dataset
SEER*Stat Category
Age at Diagnosis
SEER*Stat Variable Name
Restrictions
Age recode with single ages and 85+
Sex
Year of diagnosis
Addr at DX – state
County at DX Analysis
Race, Sex, Year Dx, Registry,
County
State-county
Rural-urban continuum 2013
NPCR project flag
Economic status
Race and origin recode (NHW, NHB,
NHAIAN, NHAPI, Hispanic)
Race recode (White, Black, Other)
Primary Site – labeled
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Grade
Grade clinical
Grade pathological
Site and Morphology
Diagnostic confirmation
ICD-O-3-Hist/behavior, labeled
ICD-O-3-Hist/behavior, malig, labeled
Site recode ICD-O-3/WHO 2008
ICCC site recode, 3rd edition
Behavior recode for analysis
derived/WHO2008
Derived SS2000
Stage – LRD [Summary and
Historic]
SEER Summary Stage 2000
Summary Stage 2018
Merged Summary Stage
Therapy
Extent of Disease
RX summ – surg prim site
Diagnosis years ≥2010
Merged radiation
Female breast and colorectal only, diagnosis
years ≥2010, and NPCR CCRs only
CS Site-Specific Factor 1
Brain/CNS and diagnosis years 2011–2017
Merged estrogen receptor
Female and male breast only and diagnosis
years ≥2004
Merged progesterone receptor
Female and male breast only and diagnosis
years ≥2004
NPCR-CSS 2025 Data Release Policy • Page 39
SEER*Stat Category
SEER*Stat Variable Name
Merged HER2 receptor
Restrictions
Female and male breast only and diagnosis
years ≥2010
Laterality
Survival months – presumed alive
Survival months flag – presumed alive
Cause of death (ICD-10)
ICD revision number
Vital status
Cause of Death (COD) and
Follow-up
Follow-up source central
COD exclusion flag
COD exclusion flag – external
Original vital status
Vital status recode (study cutoff used)
Cause of death recode
COD recode with Kaposi and
mesothelioma
Multiple Primary Fields
Sequence number - central
Age at Diagnosis
Race and Age (case data only)
Race 1
NHIA derived Hispanic origin
Age recode with <1 year olds
Dates
Presumed alive year of last contact
recode
Presumed alive month of last contact
recode
Presumed alive day of last contact
recode
Year of birth
Month of diagnosis
Day of diagnosis
Original day of last contact
Original month of last contact
Original year of last contact
Original year of diagnosis
Original day of diagnosis
Original month of diagnosis
Other
Type of Reporting Source
User-Specified
EDPMDE LinkVar
NPCR-CSS 2025 Data Release Policy • Page 40
Appendix H: NPCR-CSS 308(d) Assurance of Confidentiality Statement
A public health surveillance system of population-based cancer incidence data received from cooperative agreement
holders for the National Program of Cancer Registries is being conducted by the National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP) of the Centers for Disease Control and Prevention (CDC), an agency of
the U.S. Department of Health and Human Services, and ICF Incorporated, a contractor of CDC. The information to be
received by CDC is a subset of a standard set of data items that the state central cancer registry routinely receives from
hospitals, pathology labs, clinics, private physicians, and other mandated reporters on all cancer cases diagnosed in the
state. This information includes patient demographics and cancer diagnosis, treatment, and outcome data.
Each year, CDC requests cumulative data from central cancer registries. The variables reported to CDC may vary from
year to year. The data submitted to CDC do not contain any direct identifiers, such as name or Social Security Number.
Though project data do not contain direct identifiers, CCRS do report indirect identifiers such as patient demographic data
items (e.g., a unique identifier, birth date, sex, race, ethnicity, birth place, county of residence, census tract, zipcode) and
information about the type of cancer (e.g., date of diagnosis, stage at diagnosis, treatment). The cancer registries
maintain these data permanently in longitudinal databases that are used for public health surveillance, program planning
and evaluation, and data analyses. CDC updates its longitudinal database each year with data received from central
cancer registries. NCCDPHP, recognizing the sensitivity of the data being furnished by the states, has applied for and
obtained an Assurance of Confidentiality to provide a greater level of protection for the data while at CDC and at the
contractor site.
Individual record-level data received by CDC or its contractors as part of this public health surveillance system that could
lead to direct or indirect identification of cancer patients is collected and maintained at CDC under Section 306 of the
Public Health Service (PHS) Act (42 U.S.C. 242k) with an assurance that it will be held in strict confidence in accordance
with Section 308(d) of the PHS Act (42 U.S.C. 242m). It is used only for purposes stated in this assurance and are not
otherwise disclosed or released, even following the death of cancer patients in this surveillance system. These data are
used by CDC scientists for routine cancer surveillance, program planning and evaluation, and to provide data for cancerrelated research questions that support the purpose of this public health surveillance program, e.g., monitoring the
frequency and distribution of disease, evaluating cancer prevention and control activities, program planning and
evaluation.
Researchers within CDC, including contract employees and qualified organizations, will be able to access individual,
record-level data (i.e., data that do not directly identify individuals but that could lead to identification when combined with
other information) for legitimate cancer-related research questions and reporting purposes through the full NPCR CSS
analytic dataset, a less restricted dataset with information not included in the restricted-access datasets but one that does
not contain all data submitted by the CCRs. A separate complete dataset (i.e., all information submitted by the CCRs) is
available for data quality assessments only. “Qualified organizations” are defined as organizations with staff qualified to
undertake the proposed analyses by means of specific academic training or demonstrable, related experience in cancer
epidemiologic, medical, biomedical, or statistical research and the organization is identified in the NPCR CSS Data
Release Policy. These individuals and organizations will be required to adhere to a strict security and confidentiality
protocol.
Restricted access will be provided to researchers outside of the CDC, its contractors, or qualified organizations through
the National Center for Health Statistics Research Data Centers (NCHS RDC) or, in limited instances, an aggregated data
file for federal and trusted partners. A restricted-access dataset is defined as the version of the full NPCR CSS analytic
dataset, either aggregated data or individual, record-level data that have been modified as needed to minimize the
potential for disclosure of confidential information. For restricted-access datasets, some variables such as county at
diagnosis will only be released in a modified format. The unique identifying number assigned to each individual by the
central cancer registry is replaced by a random number assigned at CDC to reduce the possibility of linkage to other
state- or territory-level files with indirect identifiers. This restricted access will be controlled in such a way as to limit the
researchers’ ability to publish or otherwise provide others access to data that could lead to identification of an individual
NPCR-CSS 2025 Data Release Policy • Page 41
(i.e., small numbers of cases, unique cancer types in a small geographic area, or aggregated in a way that a case could
be identified).
Information collected by CDC is used without personal identifiers for publication in statistical and analytic summaries and
for release in restricted release datasets for research. Information that could lead to direct or indirect identification of
cancer patients is not made available to any group or individual that have not met the qualifications established by CDC
and are not described in the NPCR CSS Data Release Policy. In particular, such information is not disclosed to insurance
companies, any party involved in civil, criminal, or administrative litigation, agencies of federal, state, or local government,
or any other member of the public.
Collected information that could lead to direct or indirect identification of cancer patients is kept confidential and—with the
exception of CDC employees, their contractors, and qualified researchers—no one is allowed to see or have access to the
information. CDC employees and contractors are required to handle the information in accordance with principles outlined
in the CDC Staff Manual on Confidentiality and to follow the specific procedures documented in the Confidentiality
Security Statement for this project. Qualified researchers are required to sign the NCHS RDC data sharing agreements
and abide by the NCHS RDC confidentiality procedures. Access to data released through public-use datasets requires the
user to complete and return a signed data use agreement acknowledging confidentiality requirements. Qualified
organizations (e.g., the North American Association of Central Cancer Registries, American Cancer Society, National
Cancer Institute, and the Central Brain Tumor Registry of the United States) are required to sign a detailed data release
agreement to have access to restricted release data.
NPCR-CSS 2025 Data Release Policy • Page 42
Appendix I: Frequently Asked Questions About the NPCR-CSS 308(d) Assurance
of Confidentiality
Background
The Centers for Disease Control and Prevention (CDC) is responsible for public health surveillance in the United States.
CDC collects, compiles, and publishes a large volume of personal, medical, epidemiologic, and statistical data. The
success of CDC’s operations depends, in part, on the agency’s ability to protect the confidentiality of these data. While it
is a matter of principle for CDC to guard sensitive information, and federal statutes such as the Privacy Act of 1974
provide a degree of protection for personally identifiable data, Section 308(d) of the Public Health Service Act (42 U.S.C.
242m(d)) enables CDC to provide the highest level of confidentiality protection for sensitive and mission-significant
research and surveillance data.
CDC received a formal delegation of authority from the National Center for Health Statistics (NCHS) to grant 308(d)
confidentiality protection in 1983. Section 308(d) of the Public Health Service Act ensures the confidentiality of data
collected under Sections 304 and 306 of the Public Health Service Act. These special legislative authorities were the
provisions under which NCHS collects and safeguards most of its survey data, along with the mortality data in the
National Death Index. CDC was required to establish a stringent application process and continues to use the authority
sparingly. The agency has granted confidentiality assurances to projects deemed significant to CDC’s mission, such as
surveillance of hospital infections, AIDS and HIV infections, pregnancy-related mortality, and congenital defects. Fewer
than 65 projects have received 308(d) protection since CDC received this authority, and about 25 active projects have
308(d) confidentiality assurances now. As a testament to the importance of this project to CDC’s mission, its National
Program of Cancer Registries (NPCR) has been afforded this special data protection.
What is stated in Public Health Service Act, Section 308(d)?
The first clause of Section 308(d) states that CDC must explain the purpose for collecting data to persons or agencies
supplying information, and it guarantees that CDC will be limited to those specified uses unless an additional consent is
obtained. Moreover, the information obtained may be used only by CDC staff or CDC’s contractors in the pursuit of such
stated purposes. The second clause states that CDC may never release identifiable information without the advance,
explicit approval of the person or establishment supplying the information or by the person or establishment described in
the information.
What process did NPCR undertake to obtain 308(d) confidentiality protection?
NPCR staff worked with CDC’s Office of General Counsel and CDC’s Confidentiality and Privacy Officer to prepare the
application for the NPCR-Cancer Surveillance System (CSS) project. The application contained the following four
components:
•
A Justification Statement summarizing the NPCR-CSS project’s programmatic purpose, the type of data to be
collected, and the uses to be made of the information. This statement also included an assurance that a) the
requested data would not be furnished without the guarantee of a confidentiality assurance, b) confidentiality
assurance is important to protect the individuals described in the data and to reassure the institutions submitting
data, c) the information cannot reliably be obtained from other sources, d) the information is essential to the
project’s success, e) granting the confidentiality assurance would not prohibit CDC from fulfilling its
responsibilities, and f) the advantages of assuring confidentiality outweigh the disadvantages.
•
An Assurance of Confidentiality Statement delineating anticipated data uses and those with whom identifiable
data would be shared, along with general advisements regarding the confidentiality protection.
•
A Confidentiality Security Statement detailing the stringent safeguarding measures in place to ensure that the
promise of confidentiality would not be jeopardized by practices of staff handling the data.
NPCR-CSS 2025 Data Release Policy • Page 43
•
An Institutional Review Board (IRB) Review Status Statement verifying NPCR-CSS’s exemption from CDC IRB
approval. (The Human Subjects Administrator at the National Center for Chronic Disease Prevention and Health
Promotion determined that NPCR-CSS activities are routine surveillance and not research on human subjects.
Therefore, protocol review by CDC IRB was deemed unnecessary.)
The application was submitted to the CDC Confidentiality Officer for review and modification, prepared for presentation to
the CDC Confidentiality Review Group (CRG), and in May 2000 NPCR received 308(d) confidentiality protection approval
for NPCR-CSS data, including authorization for retroactive confidentiality protection beginning with diagnosis year 1995.
NPCR must file for continuation every 5 years to maintain the assurance.
What makes 308(d) confidentiality assurance the best protection for NPCR-CSS data?
The 308(d) confidentiality assurance is the only confidentiality protection that covers routine surveillance activities such as
those conducted by NPCR-CSS. The assurance specifies that data protected by 308(d) may be used only for statistical or
epidemiological purposes and not released further in identifiable form without consent. Another exclusive advantage of
308(d) is that it also protects indirectly identifiable data. Operationally, this means that NPCR may never release a directly
identifiable variable such as a Social Security number or any combination of variables that could be used to identify an
individual indirectly. Finally, 308(d) provides protection for information on both living and deceased individuals.
Are there any disadvantages to individuals or institutions protected by the 308(d)
confidentiality assurances?
A 308(d) confidentiality assurance does not pose a disadvantage for individuals or institutions submitting data to CDC. In
fact, 308(d) provides an added benefit because it prevents CDC from freely releasing data to researchers and any other
persons or entities that could request access to the data. With the confidentiality assurance protecting NPCR-CSS data,
NPCR staff members are prohibited from sharing data except for the purposes stated at the time of data collection, unless
consent from those who provided the assurance is obtained.
Does NPCR’s 308(d) confidentiality assurance protect the data from subpoena and Freedom of
Information Act (FOIA) requests?
The 308(d) assurance is the strongest protection against compulsory legal disclosure that CDC can offer. Although CDC
receives FOIA requests, the FOIA (b)(6) exemption enables CDC to withhold sensitive, individually identified data that
would constitute a “clearly unwarranted invasion of personal privacy.” It is CDC’s firm position that all projects covered by
a 308(d) confidentiality assurance, including NPCR-CSS, meet this exemption.
Has a case involving 308(d) been tested in court?
Yes. CDC’s ability to protect data submitted to the agency was upheld in court. The case involved a National Institute for
Occupational Safety and Health project collecting death certificate information, which is widely accepted as the least
sensitive data protected by 308(d). The court’s ruling in favor of the non-release of these data establishes an effective
precedent for restricting access to more sensitive data, such as those collected by a cancer registry.
How long are confidential data submitted to NPCR-CSS protected?
NPCR-CSS data are covered by the 308(d) confidentiality assurance forever. Individual records in the NPCR-CSS are
protected even following the death of the cancer patients.
Will NPCR release CSS data to persons or agencies outside of CDC?
An assurance of confidentiality protects NPCR-CSS data held at CDC and by its contractor. The 308(d) confidentiality
protection does not go with the data whether released publicly or through restricted means, and any data CDC releases to
NPCR-CSS 2025 Data Release Policy • Page 44
qualified researchers are subject to the limits of any coverage afforded by the requesting agency. However, it is important
to note that NPCR’s confidentiality assurance prohibits the release of any data that are directly or indirectly identifiable.
Therefore, CDC would not release highly sensitive NPCR-CSS data. Restricted access data that are released to external
researchers are done so in accordance with the NCHS RDC proposal process and confidentiality procedures, prohibiting
attempts to identify subjects within the record system. Under the 308(d), NPCR is permitted to release NPCR-CSS data to
qualified researchers and organizations, such as the North American Association of Central Cancer Registries
(NAACCR), American Cancer Society (ACS), and National Cancer Institute (NCI). This is so because these entities were
specifically mentioned in the NPCR-CSS confidentiality assurance as anticipated recipients of identifiable data. Prior to
the restricted release of NPCR-CSS data to qualified organizations, a detailed data use agreement must be signed by the
requesting party. Information that could lead to the identification of cancer patients, through direct or indirect methods,
cannot be made available to any other group or individual. In particular, NPCR cannot disclose information to insurance
companies; any party involved in civil, criminal, or administrative litigation; agencies of federal, state, or local government;
or any other member of the public.
Are there penalties for violating the confidentiality assurance?
NPCR employees and NPCR-CSS contractor staff working on the NPCR-CSS project may be subject to fine,
imprisonment, and termination of employment for unauthorized disclosure of confidential information. To assure that all
NPCR employees are aware of their responsibilities to maintain and protect NPCR-CSS records and the penalties for
failing to comply, CDC employees must read and sign a data use agreement. Contract employees with access to NPCRCSS data are required to sign a confidentiality agreement.
The research use NPCR/SEER USCS Incidence Public Use dataset contains individual case-specific data from the USCS
dataset with enforced fewer than 16 case cell suppression and case listing disabled.
NPCR-CSS 2025 Data Release Policy • Page 45
Appendix J: Data Items for NPCR/SEER USCS Incidence Public Use Research
Dataset
SEER*Stat Category
Age at Diagnosis
SEER*Stat Variable Name
Restrictions
Age recode with <1 year olds
Sex
Year of diagnosis
Addr at DX – state
USCS standard
Program
Region
Race, Sex, Year Dx, Registry
USCS0122
USCS1423
USCS1923
Race recode (W, B, AIAN, API)
Race and origin recode (NHW, NHB,
NHAIAN, NHAPI, Hispanic)
Origin recode NHIA (Hispanic, Non-Hisp)
Primary site – labeled
Histologic type ICD-O-3
Grade
Grade clinical
Grade pathological
Diagnostic confirmation
ICD-O-3 hist/behavior, labeled
Site and Morphology
Site recode ICD-O-3/WHO 2008
Schema ID
ICCC site recode 3rd ed ICD-O-3/IARC
2017
ICCC site rec extended 3rd ed ICD-O3/IARC 2017
AYA site recode 2020
Lymphoid neoplasm recode 2021 revision
Behavior ICD-O-3
Stage – LRD [Summary and
Historic]
Merged summary stage
Therapy
RX summ – surg prim site
Female breast only and diagnosis years ≥2010
CS site-specific factor 1
Brain and other CNS and diagnosis years
2011–2017
Extent of Disease
Merged estrogen receptor
Female, Schema ID=breast, and diagnosis
years ≥2010
NPCR-CSS 2025 Data Release Policy • Page 46
SEER*Stat Category
SEER*Stat Variable Name
Restrictions
Merged progesterone receptor
Female, Schema ID=breast, and diagnosis
years ≥2010
Merged HER2 receptor
Female, Schema ID=breast, and diagnosis
years ≥2010
Laterality
Multiple Primary Fields
Geographic Locations
Dates
Sequence number – central
Rural-urban continuum 2013
Grouped into 3 categories: metro (RUCC 1–3);
nonmetro (RUCC 4–9); unknown
Year of birth
Month of diagnosis
Alcohol-related cancers
HPV-related cancers
Merged System-Supplied
Obesity-related cancers
Physical inactivity-related cancers
Tobacco-related cancers
State race eth suppress
NPCR-CSS 2025 Data Release Policy • Page 47
Appendix K: NPCR/SEER – U.S. Cancer Statistics Public Use Research Database
User Agreement
The following form will be completed by individuals requesting access to the NPCR/SEER – U.S. Cancer Statistics Public
Use Research Database.
National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER)
Incidence—U.S. Cancer Statistics Public Use Research Database Request Form 2023 Data Submission
The Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI) make NPCR and SEER
data available to the public and researchers through various data release activities. The U.S. Cancer Statistics Public Use
Research Database is an unrestricted subset of data submitted to CDC and NCI and made available only through NCI’s
SEER*Stat software.
NPCR has obtained an assurance of confidentiality pursuant to Section 308(d) of the Public Health Service Act, 42 U.S.C.
242m(d). This assurance provides that identifiable or potentially identifiable data collected by CDC may be used only for
the purpose for which they were obtained unless the person or establishment from which they were obtained has
consented to such use. Any effort to determine the identity of any reported cases, or to use the information for any
purpose other than statistical reporting and analysis, is a violation of the assurance.
By using the U.S. Cancer Statistics Public Use Research Database, you agree to comply with the following requirements:
• You will use these data for statistical reporting and analysis only.
• You will not present, publish, or otherwise make public statistics based on fewer than 16 cases.
• You will not link or permit others to link the database with individually identifiable records from any other dataset
without CDC’s written approval.
• You will not attempt to learn the identity of any person or establishment included in these data.
• If you discover the identity of any person or establishment inadvertently, you will not disclose or use this
information, and you will advise CDC at uscsdata@cdc.gov.
We suggest the following citation: National Program of Cancer Registries and Surveillance, Epidemiology, and End
Results Program SEER*Stat Database: NPCR and SEER Incidence—U.S. Cancer Statistics Public Use Research
Database, [year] submission ([year]–[year]). United States Department of Health and Human Services, Centers for
Disease Control and Prevention and National Cancer Institute. Released June [year]. Available at www.cdc.gov/unitedstates-cancer-statistics/public-use/.
Please note: You must have access to SEER Research Plus before you can be given access to the database. When you
have access to SEER Research Plus data, complete the fields below and email this form to uscsdata@imsweb.com. The
email address you provide must be the same one used to obtain access to SEER Research Plus.
Name ___________________________________________________________________________________________
Title and organization _______________________________________________________________________________
Email address _____________________________________________________________________________________
NPCR-CSS 2025 Data Release Policy • Page 48
The following text will appear in a pop-up message box whenever a user opens the NPCR/SEER – U.S. Cancer Statistics
Public Use Research Database.
The National Program of Cancer Registries (NPCR), Centers for Disease Control and Prevention (CDC), has
obtained an assurance of confidentiality pursuant to Section 308(d) of the Public Health Service Act, 42 U.S.C.
242m(d). This assurance provides that identifiable or potentially identifiable data collected by the NPCR may be
used only for the purpose for which they were obtained unless the person or establishment from which they were
obtained has consented to such use. Any effort to determine the identity of any reported cases, or to use the
information for any purpose other than statistical reporting and analysis, is a violation of the assurance.
By using the U.S. Cancer Statistics Public Use Research Database, you agree to comply with the following
requirements:
• You will use these data for statistical reporting and analysis only.
• You will not present, publish, or otherwise make public statistics based on fewer than 16 cases.
• You will not link or permit others to link the database with individually identifiable records from any other
dataset without CDC’s written approval.
• You will not attempt to learn the identity of any person or establishment included in these data.
• If you discover the identity of any person or establishment inadvertently, you will not disclose or use this
information, and you will advise CDC at uscsdata@cdc.gov.
By clicking the “OK” button I signify that I will abide by the terms of data use states above.
NPCR-CSS 2025 Data Release Policy • Page 49
Appendix L: NPCR Data at the NCHS RDC Questions and Answers
Can you summarize the data access process?
CDC uses the National Center for Health Statistics’ (NCHS) Research Data Center (RDC) as a mechanism for
researchers outside of the Division of Cancer Prevention and Control (DCPC) to request and gain access to the
Restricted-Access NPCR/SEER data for research purposes. The data are available through the NCHS RDC only after the
standard data quality reviews that occur as part of the preparation for USCS.
The use of the NCHS RDC to manage data access provides the highest level of data security and protection of
confidentiality that is available for analysis of data. Any researcher must submit a proposal that is reviewed and approved
by CDC and may be reviewed by representatives from the participating central cancer registries (CCRs) before any data
analysis begins. Trained data analysts at the NCHS RDC create a dataset that is customized to each analysis. The
researcher can run his or her own statistical analysis or have the NCHS RDC analyst run the analysis. The NCHS RDC
analyst reviews all output from statistical analysis to ensure that the researcher only conducts analyses relevant to the
approved protocol and that small cell sizes are suppressed. Absolutely no individual-level data leave the NCHS RDC
facilities. The data can only be accessed onsite; the NCHS RDC remote option is not available for the Restricted-Access
NPCR/SEER data.
What is National Center for Health Statistics (NCHS)?
NCHS is one of the national centers at CDC and is located in Hyattsville, Maryland. As the nation’s principal health
statistics agency, it compiles statistical information to guide actions and policies to improve the health of the population.
More information about NCHS is available at www.cdc.gov/nchs/about.htm.
What is the Research Data Center (RDC)?
The NCHS RDC began in 1998 and has a long history of managing access to health and vital statistics data through a
rigorous proposal review process as well as review of the statistical output. Its mission is to give public access to a full
range of health and vital statistics data, while protecting the confidentiality of the respondents and institutions that
collected the information. There have been no breeches of confidentiality for data access through the NCHS RDC.
The NCHS RDC houses sensitive, but not classified, data. It allows access to individual data without the possibility of
disclosure of identifying information. The NCHS RDC offers statistical, programming, and consulting expertise to facilitate
the data analysis for research.
The NCHS RDC is a data hosting center, not a data repository. The data extracts that are hosted on the NCHS RDC are
tailored specifically to the proposal and have a research life cycle. When the analysis is completed, the data extract is
archived for 2 years and then destroyed. More information about the NCHS RDC is available at www.cdc.gov/rdc/.
Why does CDC use the NCHS RDC?
Maintaining confidentiality is the primary objective of the NCHS RDC. Its staff have statistical expertise to address
confidentiality and disclosure risk. Using the NCHS RDC allows CDC to comply with the Assurance of Confidentiality
[308(d)] that was obtained for the NPCR-CSS data. All researchers must take a confidentiality orientation, complete
confidentiality forms, and review the disclosure manual, all of which outline practices that are essential to protecting the
data and preventing disclosure of confidential information. Additionally, data housed at the NCHS RDC are not subject to
the Freedom of Information Act (FOIA). More information about confidentiality is available at
www.cdc.gov/rdc/B4ConfiDisc/CfD400.htm.
The use of the NCHS RDC to host the NPCR data provides confidence in knowing that the data are used correctly and
safely by external researchers. In addition, this approach will not overtax resources in CDC’s Division of Cancer
NPCR-CSS 2025 Data Release Policy • Page 50
Prevention and Control or in the CCRs. The NCHS RDC provides a level of data control beyond that of any other data
access system used for registry data.
What is the research proposal process?
The NCHS RDC has a rigorous review process for analyses proposed by any researchers wanting to use RADS data. All
proposals will be evaluated by a Review Committee consisting of the NCHS RDC Director, the Confidentiality Officer, the
assigned NCHS RDC analyst, and NPCR representatives. The iterative review and comment process may take 6 to 8
weeks.
Through this process, the NCHS RDC staff, the NPCR staff, and the CCR staff will fully understand the intended analysis
and will be able to provide any needed direction or restrictions on the analysis and describe any limitations in what is
proposed. It will be possible for CDC and participating registries to disapprove a proposal. However, guidance and redirection as needed should be the norm. More Information about the review process is available at
www.cdc.gov/rdc/leftbrch/userestricdt.htm.
Once a proposal has been approved, the NCHS RDC offers a secure environment for data analyses and has processes in
place to review data output for small cell sizes. This will ensure that the NPCR suppression rules are properly applied.
Through the NCHS RDC, the user can conduct analyses and have remote access to data but cannot download the
individual record level data or obtain counts for inappropriately small cell sizes.
Who has access to the data and at what level?
The NCHS RDC analysts can access the individual record-level data, since it is easier to create an analytic dataset using
these data. The NCHS RDC analysts are bound by the same data use agreements that CDC staff sign annually.
Researchers with approved proposals can conduct analyses through the NCHS RDC on the created dataset or have an
NCHS RDC analyst do the analysis for them. However, they cannot download any part of the data from the NCHS RDC.
Any additional variables that were not included in the original analysis proposal will need a separate approval process.
Note that this is different from the process that NPCR has used in the past, where researchers with approved proposals
had direct access to the dataset, including the ability to download the data and create a list of individual record-level data
and all variables in the dataset.
Researchers have several possible modes of access to the dataset created for their specific research proposal. More
information is available at www.cdc.gov/rdc/B2AccessMod/ACs200.htm.
When a researcher conducts an analysis, what type of output will he or she get?
If a researcher is on-site at the NCHS RDC, he or she can save the results on the hard drive of the NCHS RDC computer.
The NCHS RDC analyst will review the output for disclosure then either load the output onto a flash drive supplied by the
researcher or e-mail the output files to the researcher. If a researcher is accessing the NCHS RDC remotely, he or she
will send program by e-mail and, after disclosure review by the NCHS RDC analyst, will receive the output files by e-mail.
No individual record level data are released to the researcher.
Can CCRs decide whether their data are available through the NCHS RDC?
Participation in all CDC-created and hosted analytic datasets and web-based data query systems, as outlined in the
annual NPCR-CSS Data Release Policy, is a required strategy. Therefore, data from all CCRs meeting eligibility
requirements are included. Data use is important to NPCR and for continued support of the registries.
Will the CCRs be able to decide if their county-identifying variable (County at Dx-Analysis
NPCR-CSS 2025 Data Release Policy • Page 51
[NAACCR#89]) is to be available for use in the NCHS RDC?
Participation in all CDC-created and hosted analytic datasets and web-based data query systems, as outlined in the
annual NPCR-CSS Data Release Policy, is a required strategy. [DP22-2202, Program 3: NPCR, Strategy 1, Required
Activities, Data Submission (page 33)]. Therefore, data from all CCRs meeting eligibility requirements are included. Data
use is important to NPCR and for continued support of the registries. County data will be used only in approved analyses
and in the following ways:
•
As a linkage variable (to census data, for example) only by the NCHS RDC analyst. The county variable will not
be available to the researcher. The NCHS RDC analyst uses it to create a linked dataset and then removes it.
•
As a confounder or other control variable, but no data are presented by county. The NCHS RDC analyst creates
dummy variables to mask the actual county name.
•
In geographically aggregated form such as large metropolitan statistical areas (those with a population of 1 million
or larger), multi-county regions, or geographic areas such as Appalachia or IHS Contract Health Services Delivery
Areas (CHSDA) counties. The county data make it possible for the NCHS RDC analyst to create these areas for
the researcher.
Previous data release policies indicate that the project proposals for RADS would be reviewed
by the RADS working group, facilitated by CDC with representation by the CCRs. Does this
procedure change now that the NCHS RDC is used?
The CCRs will still have input on the RADS proposals. The NCHS RDC review process includes the NCHS RDC analyst
and the confidentiality officer, who are responsible mainly for disclosure review to ensure that we abide by the 308(d)
assurance of confidentiality obtained for NPCR-CSS. More information about the NCHS RDC review process is available
at: https://www.cdc.gov/rdc/b1datatype/rdc-Output.htm.
Will SEER data be included for analysis or will the data be limited to NPCR data?
Yes. Both NPCR and SEER data may be accessed through the NCHS RDC.
Will the NCHS RDC staff have access to SEER*Prep and SEER*Stat?
No. NPCR previously provided a SEER*Stat file to the NCHS RDC but found that researchers only used the SAS file.
Therefore, the SEER*Stat file is no longer provided.
What suppression rules will be used for the RADS?
RADS use the same suppression rules that are used for United States Cancer Statistics. More detailed information is
available at www.cdc.gov/cancer/npcr/uscs/technical_notes/stat_methods/suppression.htm.
The suppression rules for Asian and Pacific Islander (A/PI) people and American Indian and Alaska Native (AI/AN) people
will also apply.
CDC doesn’t collect personal identifiers like name or Social Security number. Wouldn’t it be
better for researchers to contact CCRs directly for linkage studies?
Yes, it would be best for researchers to contact CCRs directly for linkage studies that require individual identifiers.
However, valuable public health research can be conducted with access to county-level data. Examples include linkage
with U.S. Census data for socioeconomic analyses, or to examine regional differences in the prevalence of a specific
cancer.
NPCR-CSS 2025 Data Release Policy • Page 52
Will IRB review be required for each proposal? If not, will NCHS require researchers to obtain
IRB approval before they submit their proposal?
The NCHS RDC has an umbrella ethics review board (ERB) protocol that covers CDC employees and can be extended to
external researchers. The principal investigator and all research team members who come in contact with the data must
take the confidentiality orientation and complete the confidentiality forms. One of the confidentiality forms is the
designated agent form (www.cdc.gov/rdc/Data/B4/DesignatedAgent.pdf [PDF-41KB]), which extends the ERB to cover
external researchers.
Note that the ERB protocol serves the same function as an institutional review board (IRB) protocol. At CDC, one office
coordinates the submission and tracking of human research protocols. However, other centers such as NCHS and the
National Institute of Occupational Safety and Health have different names for these review boards: Research Ethics
Review Board (ERB) at NCHS and Human Subjects Review Board (HSRB) at NIOSH.
Researchers may choose to obtain an IRB protocol from their own institution, but it will not be required.
Does access to the RADS cost anything?
No. CDC covers the cost of analyzing RADS through the NCHS RDC.
As more researchers become aware of the RADS, they may want access to additional
variables that CCRs submit to CDC. How will this process be handled?
The addition of new variables in RADS will be discussed with CCRs prior to their inclusion in the data release policy,
which is updated annually.
How is access to the comparative effectiveness research (CER) dataset managed?
Access to the CER dataset is managed through the same NCHS RDC process. The proposal process will not differ
except that staff from the specialized registries funded for CER data collection will review these proposals.
NPCR-CSS 2025 Data Release Policy • Page 53
Appendix M: Data Items for Restricted-Access Dataset (RDC)
The restricted-access dataset consists of individual case-specific data derived from the NPCR-CSS dataset. The data are
available to researchers at NCHS’ Research Data Center (RDC) as a SAS file. SAS files are created specifically for each
project’s needs. The data items that researchers may request are listed below.
Variable Name
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Alternate Patient ID Number
Address at Diagnosis – State
Address at Diagnosis – County at Analysis*
USCS Standard
USCS9923
USCS1923
USCS9823
USCS1423
Address at Diagnosis – Census Region
Race 1
Race 2
Race Recode (W, B, AI, AN)
Race and origin recode (NHW, NHB, NHAIAN, NHAPI, Hispanic)
Econ Status
State race eth suppress
Origin Recode NHIA (Hispanic, Non-Hispanic)
IHS Link
State Race Ethnicity Suppress
Sex
Age at Diagnosis**
Age Recode
Birth Date***
Econ status
Rural-urban continuum 2013
Sequence Number – Central
Date of Diagnosis****
Primary Site
Laterality
Grade
Grade Clinical
Grade Pathological
Grade Post Therapy
Diagnostic Confirmation
Type of Reporting Source
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Behavior Recode for Analysis Derived/WHO 2008
Primary Site Recode
Schema ID
SEER International Classification of Childhood Cancer (ICCC) Recode Extended 3rd edition/IARC 2017
AYA Site Recode 2020
NPCR-CSS 2025 Data Release Policy • Page 54
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Lymphoma Neoplasm Recode 2020 Revision
SEER Summary Stage 2000
SEER Summary Stage 1977
Derived SS2000
Summary Stage 2018
Merged Summary Stage
RX Summ – Surg Prim Site
Merged radiation
CS Site-Specific Factor 1
Merged Estrogen Receptor
Merged Progesterone Receptor
Merged HER2 Receptor
Over-ride Age/Site/Morph
Over-ride SeqNo/DxConf
Over-ride Site/Lat/Sequence Number
Over-ride Site/Type
Over-ride Histology
Over-ride Report Source
Over-ride Ill-define Site
Over-ride Leuk, Lymphoma
Over-ride Site/Behavior
Over-ride Site/Lat/Morph
Alcohol-related cancers
HPV-related cancers
Obesity-related cancers
Physical activity-related cancers
Tobacco-related cancers
* County data will be used only in approved analyses and in the following ways: a) as a linkage variable (linkage to census
data, for example) only by the NCHS RDC analyst; b) as a confounder or other control variable, but no data are presented
by county; c) in geographically aggregated form such as large metropolitan statistical areas (those with a population of 1
million or larger), multi-county regions, or geographical areas such as Appalachia or IHS Contract Health Services
Delivery Areas (CHSDA) counties.
**Age over 99 is recoded.
***Only year is provided; if age is over 99, year of birth is recoded.
****Day of diagnosis is not provided.
NPCR-CSS 2025 Data Release Policy • Page 55
Appendix N: NPCR-CSS Levels of Data Access
USCS Data Visualizations tool
Includes: State, county, region,
and Congressional-district
levels, no record-level
information
Criteria: USCS criteria met,
permission provided on Dataset
Participation Agreement, <16
cases cell suppression enforced
Availability: Public
CDC WONDER
Includes: State, county, region,
and MSA levels, no record-level
information
Criteria: USCS criteria met,
permission provided on Dataset
Participation Agreement, <16
cases cell suppression enforced
No additional permission
needed; users should
document its use and
include proper
acknowledgment
Availability: Public
State Cancer Profiles
Includes: State and county
levels, no record-level
information
Criteria: USCS criteria met,
permission provided on Dataset
Participation Agreement, <16
cases cell suppression enforced
Availability: Public
NPCR/SEER USCS Public Use Dataset
Includes: State record-level
information, no case listing
Criteria: USCS criteria met,
permission provided on Dataset
Participation Agreement, <16
cases cell suppression enforced
Availability: Public, user
agreement statement must be
acknowledged every time a user
opens the database
NPCR-CSS 2025 Data Release Policy • Page 56
Appendix O: Data Items for NPCR/SEER USCS Delay-Adjusted Database
SEER*Stat Category
SEER*Stat Variable Name
Delay age
Age at Diagnosis
Age recode with <1 year olds
Sex
Year of diagnosis
Race, Sex, Year Dx, Registry, County
Addr at DX – state
County at DX Analysis
State-county
Delay factor
Required Delay Fields
Delay site
Delay race (All, Race recode (White, Black, AIAN, CHSDA, API, Hisp,
Non-Hisp)
Site and Morphology
Behavior recode for analysis derived/WHO2008
Multiple Primary Fields
Sequence number - central
NPCR-CSS 2025 Data Release Policy • Page 57
NPCR-CSS 2025 Data Release Policy • Page 58
| File Type | application/pdf |
| Author | C.L.Zadoretzky |
| File Modified | 2025-08-25 |
| File Created | 2025-07-21 |