Data Release Policy

National Program of Cancer Registries
Cancer Surveillance System (NPCR-CSS)
2018 Data Release Policy
Diagnosis Years 1995–2017
___________________________
Policy Revised July 2018

Cancer Surveillance Branch
Division of Cancer Prevention and Control
NCCDPHP, CDC
4770 Buford Hwy, N.E., Mailstop F-76
Atlanta, GA 30341-3717
E-mail: [email protected] (specify “NPCR-CSS” in subject line)

TABLE OF CONTENTS

I.

INTRODUCTION .................................................................................................................. 1
Summary of Changes .................................................................................................................. 1
II. OVERVIEW OF DATA ......................................................................................................... 2
III.
DATA RELEASE ACTIVITIES ........................................................................................ 3
A. Public Web-based Query Systems ........................................................................................ 3
USCS Data Visualizations Tool.............................................................................................. 4
CDC WONDER – USCS Incidence, Mortality, Incidence/Mortality Ratios and NPCR
Survival Data .......................................................................................................................... 4
Federal Partners’ Web-based Systems .................................................................................... 5
Age-adjusted rates only....................................................................................................... 5
Age-adjusted and crude rates .............................................................................................. 5
Environmental Public Health Tracking Network ............................................................... 5
 EPHTN Unsmoothed Rates .......................................................................................... 5
 EPHTN Smoothed Rates .............................................................................................. 5
 EPHTN National Portal to State Portal ........................................................................ 6
Indian Health Services (IHS) .................................................................................................. 6
B. Data Release to Federal and Trusted Partners ....................................................................... 6
American Cancer Society (ACS) ............................................................................................ 6
Central Brain Tumor Registry of the United States (CBTRUS)............................................. 7
International Association of Cancer Registries (IACR) ......................................................... 7
 CI5 ................................................................................................................................ 7
 CI5plus.......................................................................................................................... 7
CONCORD ............................................................................................................................. 8
Agency for Healthcare Research and Quality (AHRQ) .......................................................... 8
C. Analytic datasets ................................................................................................................... 8
USCS Analytic Data ............................................................................................................... 8
NPCR/SEER USCS Incidence Analytic Dataset ................................................................ 9
NPCR Internal Survival Dataset ......................................................................................... 9
NPCR Internal Prevalence Dataset ..................................................................................... 9
NPCR/SEER USCS Delay-Adjusted Dataset ..................................................................... 9
NPCR/SEER USCS Incidence Public-Use Research Dataset .............................................. 10
Restricted-Access Research Dataset (RDC) ......................................................................... 10
D. Data Release Under Controlled Conditions ........................................................................ 11
E. Emergency and Provisional Data Releases ......................................................................... 11
IV.
PROTECTION OF DATA ............................................................................................... 12
A. Assurance of Confidentiality .............................................................................................. 12
B. Suppression of Rates and Counts ........................................................................................ 12
C. Public Release Disclosure Statement .................................................................................. 13
D. Freedom of Information Act (FOIA) Data Requests .......................................................... 13
E. CDC External Data Requests .............................................................................................. 14
V. REFERENCES ..................................................................................................................... 16

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TABLE 1

Comparison of NPCR-CSS Data………………..………………………………....18

APPENDIX A

State and Metro Area Cancer Registries………..…………………………………22

APPENDIX B

NPCR-CSS Overview of Data Security…………………………….……..............24

APPENDIX C

Data Items for CBTRUS Dataset……………………………………………….…24

APPENDIX D

NPCR/SEER USCS Analytic Data Use Agreement…….……………………...…27

APPENDIX E

CDC Nondisclosure Agreement…………………………………………………..30

APPENDIX F

Data Items for NPCR/SEER USCS Internal Analytic Dataset……….…………..31

APPENDIX G

Data Items for NPCR Internal Survival Dataset………………...…….…………..33

APPENDIX H

NPCR-CSS 308(d) Assurance of Confidentiality……………..………………...…35

APPENDIX I

NPCR-CSS 308(d) Assurance of Confidentiality FAQ….………………………..36

APPENDIX J

Data Items for NPCR/SEER USCS Incidence Public Use Dataset…………….…40

APPENDIX K

NPCR Research Data Use Agreement…………….………………………………41

APPENDIX L

NPCR Data at the NCHS RDC Q&A……………………………………………..44

APPENDIX M

Data items for Restricted Access Research Dataset………………………………50

APPENDIX N

NPCR-CSS Levels of Data Access……………….………………………………52

APPENDIX O

Data items for NPCR/SEER USCS Delay-Adjusted Database…………………..54

APPENDIX P

Data items for NPCR Prevalence Database………………………………………56

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National Program of Cancer Registries
Cancer Surveillance System
2018 Data Release Policy
June 2018
I.

INTRODUCTION

This document describes the format and content of data that the Centers for Disease Control and
Prevention’s National Program of Cancer Registries (NPCR) Cancer Surveillance System (CSS)
releases or shares. This multi-year policy updates the July 2017 NPCR-CSS Data Release Policy.
This policy applies to data submitted to the Centers for Disease Control and Prevention (CDC)
for the 2018 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 data, ensuring that the data are released according to the terms of the
NPCR-CSS Data Release 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 as a result 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 what is described in this policy. If it
is anticipated that any data will be released with less protection (as determined by the NPCRCSS Privacy Steward) for patient confidentiality than is described in this policy, NPCR central
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
 Updated description of the USCS Data Visualization tool, page 4
 Information on IHS Data Visualization, page 6
 Information on access to NPCR and U.S. Cancer Statistics analytic datasets provided to
the American Cancer Society, page 6
 Information on access to USCS Analytic Data through collaborative relationships and onsite access, page 8
 Information on the NPCR Prevalence and USCS Delay-Adjusted databases, page 9
 Updated threshold for cell suppression for the USCS Analytic Data, pages 12-13 and 20
 Description of procedure for external requests or access, page 14
 Updated list of primary sites provided to EPHTN, page 19
 Updated age groups and presentation of Summary Stage in USCS Data Visualization,
page 20
 Updated data item list for USCS Analytic Data set, page 31
 Updated data item list for the NPCR/SEER USCS Public Use Dataset, page 40
 Updated data item list for the Restricted Access Dataset, page 50
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

II.

Data item list for the USCS Delay-Adjusted database, page 54
Data item list for the NPCR Prevalence database, page 56
OVERVIEW OF DATA

In 1992 Congress established NPCR by enacting the Cancer Registries Amendment Act, Public
Law 102-515.4 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 for the
planning and evaluation of 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 Program (SEER);11,12 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);13 and established standards for
data management and data completeness, timeliness, and quality similar to those recommended
by NAACCR.13,14 In 1994, the first 37 States received funding from CDC.15 Currently, 47
States, the District of Columbia, Puerto Rico, Virgin Islands, and the U.S. Pacific Island
Jurisdictions are funded by NPCR (appendix A).16 NPCR-funded central registries collect data
on patient demographics, primary tumor site, morphology, stage of disease at diagnosis, and first
course of treatment. In addition, NPCR central 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 47 participating States, the District of Columbia, Puerto Rico,
Virgin Islands, and the U.S. Pacific Island Jurisdictions. In each state or territory, state laws and
regulations mandate the reporting of cancer cases by facilities and practitioners who diagnose or
treat cancer to the state health department or its designee.4 The central cancer registry receives
case reports from facilities and practitioners throughout the state and processes them according
to standard data management procedures.14 Personal identifiers including the patient’s name,
Social Security number, and street 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). NPCR-CSS received formal approval (protocol
#2594) from CDC’s Institutional Review Board (IRB) in October 1999. The approval is updated
annually. 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).
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.16,17
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 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 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 (i.e., when the data were
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submitted to CDC or NCI) or the date that the file was prepared. Changes in central cancer
registry incidence data that occur more than 22 months after the close of a diagnosis year are
likely to be small; however, delays in reporting are more likely to impact certain cancer sites and
may be important for some research studies.18
CDC generates multiple data products using NPCR-only data and combined NPCR and NCI's
Surveillance Epidemiology and End Results (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 entire U.S. population.

III.

DATA RELEASE ACTIVITIES

Starting with DP17-1701, participation in all CDC-created and hosted analytic datasets and webbased data query systems, as outlined in this policy, is a required strategy1. Therefore, the
NPCR-CSS Dataset Participation Agreement is no longer provided.
A. 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 (i.e., 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 and have a database behind a CDC
firewall that is either case-specific microdata or pre-analyzed data tables.2, 5–10 Users are able to
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.2, 5–10 Before
each system is finalized, the aggregate values are analyzed to determine whether there is a need
for complementary cell suppression.2, 5–10 If appropriate, the analysis includes consultation with a
statistician with specific 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 IV.C. 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 vehicles (see Table
1). As a convenience to NPCR central registries, state may request from CDC a copy of their
complete state-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:

1 DP17-1701, 2. CDC Project Description, a. Approach, iii. Strategies and Activities, Program 3: National Program
of Cancer Registries (NPCR) – Component 1, Strategy 3 Cancer Data and Surveillance (Domain 1), Data
Submission (page 19)
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

USCS Data Visualizations Tool



CDC WONDER – USCS incidence and NPCR survival data



Federal partner’s web-based query systems
o NCI’s State Cancer Profiles
o Environmental Public Health Tracking Network (EPHTN)
o Chronic Disease Indicators (CDI) website and data portal

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 Technical Notes, unless noted in separate
documentation that accompanies the data.
Separate documentation may accompany each data product that describes its unique features
(e.g., 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 Java Script
libraries, written in Microsoft .NET, that outputs data in hypertext markup language (HTML)
file 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 currently displays single year and 5-year aggregate
counts, age-adjusted rates, and 95-percent confidence intervals by primary site, sex, race, and
ethnicity at the county, state, regional, and national levels. Preliminary and delay-adjusted
incidence rates and counts, as well as other newly identified indicators, may be published in the
tool. The Data Visualizations tool has the database behind a CDC firewall with pre-tabulated
data using SEER*Stat queries, which allows for the display of counts and rates. Users are able to
access only aggregate counts and rates with all confidentiality protections built in.
Downloadable ASCII files with the pre-tabulated data are available from the tool’s website.

CDC WONDER – USCS Incidence, Mortality, Incidence/Mortality Ratios and
NPCR Survival Data
The USCS dataset available on CDC WONDER displays the aggregate incidence and mortality
counts, rates, and 95-percent confidence intervals, by primary site, sex, race, and ethnicity at the
state, regional, Metropolitan Service Areas (MSA), and national levels. Cancer
incidence/mortality ratios (by year, state, MSA, race, ethnicity, sex and cancer site) and 5-year
relative survival data (NPCR-only data by race, sex, age group, and cancer site) are also
available. The WONDER database is stored behind a CDC firewall with case-specific microdata.
Users are only able to access only aggregate counts and rates with all confidentiality protections
built in.
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The WONDER tool allows users more flexibility in creating cross-tabulations than the Data
Visualizations tool. While the same underlying USCS data is available in the two tools, more
detailed breakdowns of counts and rates are available 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 Metropolitan Service Areas that have met the population
threshold of 50,000 or more and standard 5-year age groups that can be combined by the user.

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 consists of aggregate cancer incidence counts,
crude rates, and age-adjusted 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.

Age-adjusted rates only
State Cancer Profiles is a web-based query tool that public health professional can use to
prioritize cancer control efforts at the county-, state-, and national-level. Data released to NCI
SEER for the State Cancer Profiles data product includes age-adjusted incidence and mortality
rates only.
Age-adjusted and crude rates
Data released to the U.S. Department of Health and Human Services, Office of Women’s Health
(OWH) includes crude and age-adjusted rates. The data is available through their online tool,
Health Information Gateway.
Environmental Public Health Tracking Network
USCS data are provided to the CDC’s National Center for Environmental Health’s
Environmental Health Tracking Network (EPHTN). The EPHTN portal displays single-year and
5-year aggregate incidence counts, age-adjusted rates, and 95-percent confidence intervals for
selected primary sites and age groups at the state and county level (see Table 1). Single-year can
be viewed at the state-level; data by 5-year average and 5-year summed are available at the
county-level. The EPHTN web-based query system runs using a database behind a CDC firewall
with case-specific microdata, which allows for the calculation of locally-weighted smoothed
rates or unsmoothed rates, or both:


EPHTN Unsmoothed Rates
Data published are similar to that on State Cancer Profiles. It includes cancer data from
all 50 states.



EPHTN Smoothed Rates
Smoothing is the process of averaging a measure for an area based on information about
that area and areas around it. Please note that the main purpose of smoothing is to clarify
spatial patterns and to improve the stability of rates, not to prevent disclosure of private
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information. Back-calculation of case counts from smoothed rates is sometimes possible
when the method of smoothing is made known and (non-sensitive) denominator data are
available from other sources.
Through EPHTN, users are able to access only aggregate counts and rates with all
confidentiality protections built in.


EPHTN National Portal to State Portal
CDC’s Environmental Health Tracking Branch (EHTB) has grantees in several NPCRfunded states that are responsible for the state-level public portals. In collaboration with
EHTB, upon request, CDC-NPCR provides the state-level EPHTN dataset to the EHTB
state counterpart.

Indian Health Services (IHS)
CDC continues to use the IHS linkage results for analyses of cancer incidence among American
Indians/Alaska Natives (AI/AN). In addition to improving cancer incidence rates presented in
USCS Data Visualization, an analytic database is maintained by a CDC Division of Cancer
Prevention and Control employee assigned to IHS. Access to this database is limited to approved
CDC staff. The data is used to respond to data requests for AI/AN cancer incidence rates from
tribal epidemiology centers and tribal organizations contingent upon permission from the state
registries that comprise the IHS areas of interest. By December 2018, 5-year aggregate incidence
counts, age-adjusted rates, and 95-percent confidence intervals for selected primary sites at the
IHS will be displayed in USCS Data Visualizations tool (see Table 1) Inclusion in this dataset
also allows IHS to provide the state with the date of death obtained through NDI-IHS linkage
and/or the date the linkage occurred by diagnosis year, for registries that complete an NDI
supplemental confidentiality agreement for application Y9-0033.

B. Data Release to Federal and Trusted Partners

American Cancer Society (ACS)
CDC shares NPCR and USCS data with ACS in order 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 and 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 the American Cancer Society,
and ACS staff members must sign a Data Use Agreement form and complete annual Assurance
of Confidentiality training before s/he is given access to the 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 SEER is restricted to 24-month data, excludes postal code and census tract variables,
and excludes “day” fields for date of birth and date of death.
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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: http://www.cbtrus.org/reports/reports.html. The report includes age-adjusted rates
and corresponding 95-percent confidence intervals on brain and other central nervous system
tumors and is presented by state, histology, major histology grouping, primary site, behavior,
gender, race, ethnicity, and age at diagnosis. 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 is released;
only aggregated data with the corresponding confidence intervals (if applicable) and appropriate
suppression criteria are provided to data inquirers. Attribution to the NPCR is provided.
CBTRUS signs data use agreements before data are released for their report and future inquiries.
For questions, contact CBTRUS staff at [email protected].

International Association of Cancer Registries (IACR)
The International Association of Cancer Registries (IACR) produce the Cancer Incidence in Five
Continents (CI5) and the 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 the IICC
provides 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.



IICC
Presents basic pediatric data.

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. CDC-NPCR will provide additional
information regarding the CI5 Call for Data as it becomes available. There are two components
of the CI5 Call for Data: 1) the questionnaire and introductory text and 2) data submission.
Data submitted for CI5 may also be used for the IICC publication making a separate data
submission unnecessary. This IACR product does require a separate questionnaire and
introductory text to be completed by the states.
States are responsible for completing the on-line questionnaires and providing an introductory
text, indicating if the CI5 data and introductory text are also used for the IICC product. CDCNPCR-CSS 2018 Data Release Policy
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NPCR will submit aggregated NPCR data for central cancer registries meeting USCS publication
criteria.

CONCORD
CONCORD is the global program for world-wide surveillance of cancer survival and is led by
the London School of Hygiene & Tropical Medicine and supported by the Union for
International Cancer Control (UICC). CONCORD monitors progress towards the overarching
goal of the UICC 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 world-wide cancer survival trends for certain cancer sites: i.e., stomach, colon, rectum, liver,
lung, breast, cervix, ovary, prostate, esophagus, pancreas, and melanoma of skin in adults, as
well as leukemias, lymphomas, and brain tumors in adults and children (0-14 years). The
protocol and dataset specifications are posted to NPCR-CSS Document Server, CONCORD tab
as they become available.
CDC-NPCR submits NPCR data for central cancer registries meeting USCS publication criteria
for survival analyses (meet USCS data quality criteria and have conducted active patient followup or linked records with the National Death Index).

Agency for Healthcare Research and Quality (AHRQ)
Health and Human Service’s 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. NPCRCSS data are shared with AHRQ for reports on national healthcare quality and disparities.
C. Analytic datasets

USCS Analytic Data
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 perform analyses of USCS data as needed using these internal analytic databases
created using the USCS data – that is created from combined NPCR and SEER Program data.
The datasets are made available via SEER*Stat software to federal employees, fellows, and
contractors in the Division of Cancer Prevention and Control and NCI’s Surveillance,
Epidemiology, and End Results Program (SEER) after signing a NPCR Analytic Data Use
Agreement (Appendix D) and CDC Nondisclosure Agreement (appendix E) and completing
annual Assurances of Confidentiality training. The dataset is also available to approved
partnering organizations and state 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
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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 will be provided.
Additionally, access will only be allowed on-site at CDC’s Cancer Surveillance Branch offices.
See the section “External Data Requests”.
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 for meeting national cancer control objectives. Such analyses of state and national data
are conducted routinely by federal agencies, including CDC and SEER, for programmatic or
statistical purposes, as needed, to achieve the agencies’ mandates.
There are four internal analytic datasets routinely analyzed by CDC and SEER staff members:
NPCR/SEER USCS Incidence Analytic Dataset
CDC, NCI staff members, and contractors conduct cancer surveillance and epidemiological
research that result 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 Dataset
Cancer survival data is critical for evaluating the progress and impact of early
detection/screening programs and/or comprehensive cancer control plans as well as interventions
from other sources. CDC’s NPCR-CSS calculates and publishes survival estimates on this
population at the national, state, and regional levels. Focusing on the entire NPCR-CSS dataset
supports analyses of survival estimates for rare cancers that cannot be addressed otherwise and
provides data for publication on the USCS website as official statistics for the U.S. Appendix G
lists the variables available in this dataset.
NPCR Internal Prevalence Dataset
This database provides 5-year 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.
The list of variables available in this dataset are in Appendix O.
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 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 list of variables available in this dataset are in Appendix P.
In compliance with the 308(d) Assurance of Confidentiality, CDC and SEER 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
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and to follow the specific procedures documented in the NPCR-CSS Confidentiality/Security
Statement (appendices B, H, and I).
In addition, CDC, SEER, and partner organization staff members are required to acknowledge
state cancer registries whenever NPCR-CSS data are presented, released, or published by CDC
by making available 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 1998-xxxx (excluding
SEER-Metro Registry data).

NPCR/SEER USCS Incidence Public-Use Research Dataset
For purposes of this policy, the NPCR/SEER USCS Incidence Public-Use Research Dataset is
defined as the version of the full NPCR/SEER USCS microdata (i.e., individual case-specific
data) that have been modified as needed to minimize the potential for disclosure of confidential
information. It consists of a subset of data items published in USCS. This 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. Certain data items, such as date of birth, and reporting-source (death certificate only
and autopsy) cases have also been removed from this research dataset to minimize the potential
identification of individuals with the occurrence of 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 this dataset is
in Appendix J.
The dataset, previously only available to NPCR Registry Staff, is now available publicly through
SEER*Stat software. Researchers are given access to the data after signing an NPCR and SEER
– U.S. Cancer Statistics Research Data Use Agreement (Appendix K) and SEER Research Data
Use Agreement (https://seer.cancer.gov/data/access.html). A Public Release Disclosure
Statement cautions users against inappropriate use of the data or inappropriate disclosure of
information. Cell suppression of <16 cases is automatic and the SEER*Stat case listing function
is disabled as additional data protection measures. This dataset allows the authorized counts,
crude rates, age-adjusted incidence rates, and 95-percent confidence intervals to be generated by
the authorized user 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 (i.e., 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 is available through the
NCHS RDC only after the standard data quality reviews that occur as part of the preparation for
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
10

USCS and State Cancer Profiles. 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 after the researcher completes the NCHS RDC
confidentiality and security requirements. The requestor must also comply with the
confidentiality procedures at and data sharing agreements with the NCHS RDC.
The NCHS RDC has developed and maintains detailed data sharing agreements and procedures
for user authentication and for logging and monitoring of data releases. Proposed project
proposals are reviewed by staff at central cancer registries, through the NPCR Central Cancer
Registry Council, and by CDC, which includes NPCR and NCHS RDC staff. User
documentation includes a data dictionary for every diagnosis year available at the NCHS RDC.
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 data analysis. Using the NCHS RDC allows
CDC to comply with the Assurance of Confidentiality [308(d)] that was obtained for the NPCRCSS 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 is made available to researchers through a SAS dataset. The RDC staff
creates a SAS dataset specific to each project. Researchers must include a data dictionary in their
proposal and only the requested variables are included in the SAS file.
D. Data Release Under Controlled Conditions
CDC-wide policy stipulates that a CDC program may consider release of data that cannot be
released as either a public web-based system, a research dataset, or restricted-access dataset
under certain controlled conditions.1 These controlled conditions may include a CDC-controlled
data center such as the data center established at National Center for Health Statistics (NCHS)
(http://www.cdc.gov/nchs/r&d/rdc.htm), on-site at CDC’s Cancer Surveillance Branch offices, or
through special licensing. Except as described above, NPCR-CSS data will not otherwise be
released under these controlled conditions while the current policy is in place. Release of data
under controlled conditions will be considered as part of discussions with partners, and a
determination will be made as to whether such releases of data will be considered for NPCRCSS data.
E. 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 registries, and other partners in order to facilitate quality reviews of the data.
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
11

When appropriate, individuals who participate in such reviews sign a NPCR Analytic Data Use
Agreement and a CDC Nondisclosure Agreement (when applicable) before accessing the data or
tables.
IV.

PROTECTION OF DATA

A. 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 data1–3 and specific restrictions imposed
on NPCR-CSS data (appendices B, H, and I).4 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.5–10
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.
B. 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 and 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 less 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.
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
12

Asian/Pacific Islander and American Indian/Alaskan Native data are presented only for the
nation, and states with at least 50,000 population, because of concerns regarding possible
misclassification of race data and the relatively small sizes of these populations in the United
States.
Per the Data Use Agreements, researchers using internal analytic files are required to suppress
case counts less than 6 in publications and presentations. Researchers are advised to use caution
when presenting or interpreting results based on less than 16 cases.
Complementary cell suppression and suppression of certain race and ethnicity combinations are
required as additional measures to assure confidentiality and stability.
C. 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.
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 or metropolitan area cancer registry, of any such
discovery.

D. Freedom of Information Act (FOIA) Data Requests
The Freedom of Information Act (FOIA) (http://www.cdc.gov/od/foia/) generally provides that,
upon written request from any person, a federal agency (i.e., 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
state-based data become a federal record in CDC’s possession, such records are subject to
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
13

disclosure in response to a FOIA request. The FOIA exemptions that may be available to protect
some aspects of state 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), and
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. There are
three reasons for this: (1) the state health departments can release cancer incidence data in
accordance with locally established policies and procedures and consistent with provisions of the
Cancer Registries Amendment Act (Public Health Service Act, (42 USC 280e-280e-4), as
amended);4 (2) the relative infrequency of data submission to federal agencies assures that the
state health department or its designated central cancer registry will have the most complete,
accurate, and up-to-date information; and (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, 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.
E. CDC 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, CDC staff
members or contractors tabulate the data for the inquirer. For requests that identify a state, CDC
staff members may seek States’ 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
 Subset of cases needed (specifically cancer type, data years, registries)
 Planned use of data (e.g., manuscript, poster, 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
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
14



Access is only allowed on-site at CDC’s Cancer Surveillance Branch offices.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
15

V.

REFERENCES

1. Centers for Disease Control and Prevention. CDC/ATSDR Policy on Releasing and Sharing
Data. Atlanta: Centers for Disease Control and Prevention; 2003. Available at
http://www.cdc.gov/maso/Policy/ReleasingData.pdf.
2. Centers for Disease Control and Prevention. CDC/ATSDR/CSTE Data Release Guidelines for
Re-Release of State Data. Atlanta: Centers for Disease Control and Prevention; 2003
(available upon request).
3. 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; 1999.
4. Cancer Registries Amendment Act, Public Law 102-515, Stat. 3312 (October 22, 1992).
Available at http://www.cdc.gov/cancer/npcr/npcrpdfs/publaw.pdf.
5. American Statistical Association. Data Access and Personal Privacy: Appropriate Methods of
Disclosure Control. Alexandria, VA: American Statistical Association; 2008. Available at
http://www.amstat.org/news/statementondataaccess.cfm.
6. 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.
7. Federal Committee on Statistical Methodology. Checklist on Disclosure Potential of
Proposed Data Releases. Available at http://fcsm.sites.usa.gov/committees/cdac/cdacchecklist/.
8. Federal Committee on Statistical Methodology. Report on Statistical Disclosure Limitation
Methodology. (Statistical Working Paper 22). Washington, DC: Office of Management and
Budget; 1994. Available at http://www.fcsm.gov/reports/#fcsm.
9. McLaughlin C. Confidentiality protection in publicly released central cancer registry data.
Journal of Registry Management 2002; 29(3):84–88.
10. 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.
11. Surveillance, Epidemiology, and End Results Program. The SEER Program Code Manual.
3rd ed. Bethesda, MD: National Cancer Institute,1998.
12. Percy C, Van Holten V, Muir C (eds). International Classification of Diseases for Oncology,
2nd edition. Geneva, Switzerland: World Health Organization; 1990.
13. Hultstrom D, editor. Standards for Cancer Registries, vol. II: Data Standards and Data
Dictionary, version 9.1, 6th ed. Springfield, IL: North American Association of Central
Cancer Registries; 2001.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
16

14. North American Association of Central Cancer Registries. Standards for Cancer Registries,
vol. III: Standards for Completeness, Quality, Analysis, and Management of Data.
Springfield, IL: North American Association of Central Cancer Registries; 2000.
15. 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.
16. U.S. Cancer Statistics Working Group. U.S. Cancer Statistics Working Group. United States
Cancer Statistics: 1999–2012 Incidence and Mortality Web-based Report, Technical Notes.
Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and
Prevention and National Cancer Institute; 2015. Available at: www.cdc.gov/uscs.
17. NAACCR Method to Estimate Completeness. A Data Analysis Tool for Calculations.
Available at: http://www.naaccr.org/Research/DataAnalysisTools.aspx.
18. 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):1537–45.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
17

TABLE 1 –Comparison of the National Program of Cancer Registries-Cancer Surveillance System Datasets
Overview

Format

Mode of Access

Web Address or Contact
Information

Contains Potentially
Identifiable Information
Registry Eligibility Criteria
for Data Completeness and
Quality
When Available

Public Web-Based Query Systems
USCS WONDER2
USCS Data for
Partners3

USCS Data
Visualizations
Tool
Database of
aggregate counts
and rates, with text
documentation

Web-based query
system with
downloadable
ASCII files, MS
Excel files, and
SAS datasets
USCS Web site
www.cdc.gov/canc
er/dataviz

EPHTN

Database of
aggregate counts
and rates, with text
documentation.
The database
behind the CDC
firewall is casespecific microdata.

Database of
aggregate counts and
rates, with text
documentation

Database of
aggregate counts and
rates, with text
documentation. The
database behind the
CDC firewall is casespecific microdata.

Web-based query
system

Flat ASCII file, webbased query system,
and separate brief
text documentation

Web-based query
system

CDC WONDER
http://wonder.cdc.g
ov

Request from
[email protected]
(specify “USCS
County” in subject
line)

No

No

National
Environmental Public
Health Tracking
http://www.cdc.gov/n
ceh/
tracking
No

USCS
publication criteria

USCS publication
criteria;
data meet criteria for
unknown county
Updated 2018

USCS publication
criteria;
data meet criteria for
unknown county
Updated 2018

Updated 2018

2 This data file is also shared with OWH.
3 This data file is shared with CDI and AHRQ.
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
18

Analytic datasets
USCS Public-Use
USCS RestrictedResearch Database
Access Dataset
Customized, analytic
database. The
database behind the
SEER*Stat firewall is
case-specific
microdata with
enforced cell
suppression and case
listing disabled.
SEER*Stat clientserver mode only
after receipt of signed
Data Use Agreement

Customized, analytic
database available
through proposal process

https://www.cdc.gov/
cancer/ public-use

Application process
available at
www.cdc.gov/rdc

No

Yes

USCS publication
criteria

USCS
publication criteria; data
meet criteria for
unknown county
Updated 2018

Updated 2018

On-site at CDC or
through CDC staff
assistance

TABLE 1 – Comparison of the National Program of Cancer Registries-Cancer Surveillance System Datasets

Cases Included
Public Web-Based Query Systems
USCS WONDER
NPCR/SEER
USCS County

States/ Territories

Diagnosis Years

Cancer Sites

USCS Data
Visualizations
Tool
NPCR/SEER States meeting eligibility
criteria
1999; 2000; 2001;
2002; 2003; 2004;
2005; 2006; 2007;
2008; 2009; 2010;
2011; 2012; 2013;
2014; 2015; 20112015; 2016; 2017
preliminary results

1999; 2000; 2001;
2002; 2003; 2004;
2005; 2006; 2007;
2008; 2009; 2010;
2011; 2012; 2013;
2014; 2015; 2016

All reportable invasive cancers; in situ female
breast, and benign and borderline primary
intracranial and central nervous system tumors
(diagnosis year 2004)

EPHTN

Analytic datasets
USCS Public-Use
USCS Restricted-Access
Research Database
Dataset

NPCR/SEER States
meeting eligibility
criteria

NPCR States meeting
eligibility criteria

NPCR/SEER States
meeting eligibility
criteria

NPCR States meeting
eligibility criteria

2011-2016

Individual years 2001
through 2015 for
state level; 2001-2005,
2002-2006, 2003-2007,
2004–2008; 2005-2009;
2006-2010; 2007-2011;
2008-2012; 2009-2013;
2010-2014; 2011-2015;
2012-2016 county level
Female breast; lung and
bronchus; bladder; brain
& other nervous system;
thyroid; leukemias (all
types; Acute myeloid
leukemia; Chronic
lymphocytic leukemia);
non-Hodgkin lymphoma;
all childhood cancers
(state level only);
childhood leukemias (state
level only); childhood
CNS & miscellaneous
intercranial & intraspinal
neoplasms (state level
only); mesothelioma (state
level only); kidney &
renal pelvis; prostate;
melanoma of skin; liver &
intrahepatic bile duct;
pancreas; oral/pharynx;
esophagus, larynx;
testicular

1999; 2000; 2001;
2002; 2003; 2004;
2005; 2006; 2007;
2008; 2009; 2010;
2011; 2012; 2013;
2014; 2010-2014; 20112015; 2012-2016

1999; 2000; 2001; 2002;
2003; 2004; 2005; 2006;
2007; 2008; 2009; 2010;
2011; 2012; 2013; 2014;
2015; 2016

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)

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, NOS;
leukemias;
non-Hodgkin
lymphoma; liver and
intrahepatic bile duct;
pancreas, esophagus;
and childhood cancers

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
19

TABLE 1 – Comparison of the National Program of Cancer Registries-Cancer Surveillance System Datasets

Variables Included
USCS Data
Visualizations
Tool
Geographic Levels

Race/Ethnicity

Age Groups

Summary Stage
Histology

Public Web-Based Query Systems
USCS WONDER
USCS Data for
Partners

All areas combined;
All areas combined;
U.S. census region
NPCR and SEER
and division;
state or territory;
NPCR/SEER state,
MSA for cities of
territory, county;
>500,000 (additional
SEER metropolitan
levels may be added)
area, IHS regions
(AI/AN data only)
All races combined; white; black;
Asian/Pacific Islander (API); American
Indian/Alaska Native (AI/AN); Hispanic;
white Hispanic; white non-Hispanic; black
Hispanic; black non-Hispanic

All ages combined
and standard 5-year
age groups for adults
and <15,<20, and 5year age groups for
childhood cancers

All ages combined
and standard 5-year
age groups that can
be combined by the
user

Yes
International Classification of Childhood
Cancers, Third Revision (all geographic areas
combined), Mesothelioma (national and
level), Kaposi Sarcoma (national and level),
Consensus Conf on Cancer Registration of
Brain, and CNS Tumors (all geographic areas
combined)

EPHTN

Analytic datasets
USCS Public-Use
USCS Restricted-Access
Research Database
Dataset

NPCR and SEER state
or territory;
county

NPCR state;
county

All areas combined; U.S.
census region and
division; NPCR and
SEER state or territory

NPCR and SEER state or
territory; county for
approved requests only

All races combined;
white; black; AI/AN;
API (with appropriate
50,000 population
suppression ); Hispanic;
white/black
Hispanic/non-Hispanic

All races combined;
white; black; AI/AN;
API (with appropriate
50,000 population
suppression); Hispanic

All races reported; Hispanic;
white Hispanic; white nonHispanic; black Hispanic;
black non-Hispanic

Childhood cancers: <15
and <20; all other
cancers: <50, 50–64,
65+

Childhood cancers: <15
and <20
Breast cancer: <50, 50+

All races combined;
white; black;
Asian/Pacific Islander
(API) ; American
Indian/Alaska Native
(AI/AN); Hispanic; white
Hispanic; white nonHispanic; black
Hispanic; black nonHispanic
All ages combined,
standard 5-year age
groups

No
No

No
No

Yes
Same as USCS

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
20

Standard 5-year age groups
and individual ages (Month
and day of birth not provided
for confidentiality reasons. If
the age at diagnosis >99,
then grouped into one
category. Year of birth is
also grouped.)
Yes
Yes

TABLE 1 – Comparison of the National Program of Cancer Registries-Cancer Surveillance System Datasets

USCS Data
Visualizations
Tool

Confidentiality Protection/Disclosure Limitation Measures Employed
Public Web-Based Query Systems
Analytic datasets
USCS WONDER
NPCR/SEER USCS
EPHTN
USCS Public-Use
USCS Restricted-Access
County
Research Database
Dataset

Direct or Record-Level
Identifiers?

No

No

No

No

Yes, but not in output which
will be reviewed by CDC staff
for confidentiality

Aggregation
Limited Number of
Variables

Yes
Yes

Yes
Yes

Yes
Yes

No
Yes

No
Yes

Yes

No

Yes

No

Yes

Yes for county presentation

Yes

Yes

No

No

Grouping/Collapsing of
Variables or Response
Codes; e.g., race and age
recode
(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

Yes

Yes

Yes

Yes

Yes (output reviewed by CDC

Counts and rates: count of <16

Counts and rates: 5 year
total count of <16

Counts and unsmoothed
rates: count of <16
Smoothed rates: RSE
>25%

Counts and rates: count
of <16 enforced
Case listing disabled

analyst to ensure counts of <6
are suppressed)

Complementary Cell
Suppression
Public Release Disclosure
Statement
Data Sharing Agreement
and/or IRB Approval
User Authentication

As needed

As needed

As needed

As needed

As needed

Yes

Yes

Yes

Yes

Yes

No

No

No

Yes

Yes

No

No

No

No

Yes

Logging and Monitoring

Limited

Limited

Limited

Yes, monitoring
databases used, session
type and date only

Yes

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
21

APPENDIX A – State and Metro Area Cancer Registries
State, Metropolitan Area, and Territory 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
State, Metropolitan Area, or
Were Reportable to
Territory
NPCR or SEER*
Alabama
1996
Alaska
1996
Arizona
1995
Arkansas
1996
California
1995/2000
Los Angeles
1992
San Francisco-Oakland
1973
San Jose-Monterey
1992
Colorado
1995
Connecticut
1973
Delaware
1997
District of Columbia
1996
Florida
1995
Georgia
1995/2010
Atlanta
1975
Hawaii
1973
Idaho
1995
Illinois
1995
Indiana
1995
Iowa
1973
Kansas
1995
Kentucky
1995/2000
Louisiana
1995/2000
Maine
1995
Maryland
1996
Massachusetts
1995
Michigan
1995
Detroit
1973
Minnesota
1995
Mississippi
1996
Missouri
1996
Montana
1995
Nebraska
1995
Nevada
1995
New Hampshire
1995

Federal Funding Source
NPCR
NPCR
NPCR
NPCR
NPCR/SEER
SEER
SEER
SEER
NPCR
SEER
NPCR
NPCR
NPCR
NPCR/SEER
SEER
SEER
NPCR
NPCR
NPCR
SEER
NPCR
NPCR/SEER
NPCR/SEER
NPCR
NPCR
NPCR
NPCR
SEER
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
22

APPENDIX A – State and Metro Area Cancer Registries
State, Metropolitan Area, and Territory 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
State, Metropolitan Area, or
Were Reportable to
Territory
NPCR or SEER*
New Jersey
1995/2000
New Mexico
1973
New York
1996
North Carolina
1995
North Dakota
1997
Ohio
1996
Oklahoma
1997
Oregon
1996
Pennsylvania
1995
Puerto Rico
1998
Rhode Island
1995
South Carolina
1996
South Dakota
2000
Tennessee
1999
Texas
1995
United States Pacific Island
Jurisdictions
2007
Utah
1973/2016
Vermont
1996
Virginia
1996
Virgin Islands
2016
Washington
1995
Seattle-Puget Sound
1974
West Virginia
1995
Wisconsin
1995
Wyoming
1996

Federal Funding Source
NPCR/SEER
SEER
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
NPCR
SEER/NPCR
NPCR
NPCR
NPCR
NPCR
SEER
NPCR
NPCR
NPCR

* Diagnosis year is the year during which a reported cancer case was first diagnosed.
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 2018 Data Release Policy
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1995–2017 Diagnosis Years
23

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 is 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 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 password-protected on its own security domain. No one, including NPCR-CSS
contractor non-project staff, 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 has its own directory location so that no state has access to another state’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 once they are no
longer needed.
A comprehensive security plan has been developed by the NPCR-CSS contractor’s
security team. 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 ICF International project security team oversees operations to prevent
unauthorized disclosure of the NPCR-CSS data.
Periodic (currently quarterly, but no less than once per year) reviews and updates of the
NPCR-CSS contractor’s security processes will be conducted to adjust for rapid changes
in computer technology and to incorporate advances in security approaches. The Security
Plan will be amended as needed to maintain the continued security and confidentiality of
NPCR-CSS data.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
24

APPENDIX C – Data Items for CBTRUS
The dataset for CBTRUS includes individual case-specific data from the NPCR-CSS dataset.
The data items to be included are listed below.
*Diagnosis Years 1995-2016 invasive cases only, 2004-2065 invasive, benign, and borderline cases
Item Name

NAACCR Data Item Number

Patient ID (unique)

20

NAACCR Record Version

50

State of Residence at Diagnosis

80

Comments

Results presented as 5-year average
annual rates as the smallest time
period with <16 cell and
complementary cell suppression
required

County at Diagnosis

90

Rural/Urban Continuum/Beale Code 1993

3300

Rural/Urban Continuum/Beale Code 2003

3310

NPCR Race Recode

Derived based on [160], [161], and [192] Same as race for USCS

NHIAv2 Derived Hispanic Origin

191

(Results of NAACCR Hispanic/Latino
NAPIIA
Identification Algorithm)

193

Sex

220

Age at Diagnosis

230

Sequence Number—Central

380

Date of Diagnosis (YEAR portion only)

390

Day and month of diagnosis not
requested

Date of Diagnosis (full date)

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

SEER Summary Stage 1977

760

SEER Summary Stage 2000

759
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June 2018
1995–2017 Diagnosis Years
25

Single year up to age 84; 85+
grouped into one category

APPENDIX C – Data Items for CBTRUS

Item Name

NAACCR Data Item Number

Derived Summary Stage 2000

3020

NPCR Cancer Stage

Comments

Based on 759 and 3020

RX Summ--Surgery Primary Site

1290

2003-2015 diagnosis years

RX Summ—Radiation

1360

2003-2015 diagnosis years

Rad–Regional RX Modality

1570

2003-2015 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

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June 2018
1995–2017 Diagnosis Years
26

WHO Grade

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 U.S. Cancer Statistics analytic data for research purposes, it is absolutely 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 prior to 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 the U.S. Cancer Statistics Incidence, U.S. Cancer Statistics Delay
Adjusted, NPCR Prevalence and NPCR Survival Analytic Data belong to the states and
territories. The states’ and territories’ agreement to use of the data is obtained through the
activities outlined in the general NPCR-CSS Data Release Policy and by specific requests
to the states and territories through the CSB management team.
Initials: ______



I will not use or permit others to use the datasets in any way other than for statistical
reporting and analysis. Initials: ______
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
27

APPENDIX D – NPCR/SEER USCS Analytic Data Use Agreement







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 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: ______
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 Make no use of this knowledge.
o Notify DCPC’s Cancer Surveillance Branch (CSB) Chief.
o As requested by DCPC, safeguard or destroy the information that identifies an
individual or establishment
o Inform no one else of the discovered identity. Initials: ______



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 less than 16 cases. Initials: ______



I agree that all oral or written reports will contain only aggregate data and no report of the
data containing cells with less than 6 cases will be released. Initials: ______



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 reviewed and am familiar with the Assurance of Confidentiality Training
documentation posted on the Internal Data Users Group’s intranet site. 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: ______
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
28

APPENDIX D – NPCR/SEER USCS Analytic Data Use Agreement


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
November {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
reserves 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 draft papers or abstracts to the NPCR Internal Data
Users Group at [email protected] 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: ______

My signature below indicates that I agree to comply with all the above stated provisions.

__________________________________________________________________
Signature
Date
Name:____________________________________________________________
Title______________________________________________________________
Branch____________________________________________________________
Telephone____________________

E-mail:_______________________

Please return completed form to the NPCR Internal Data Users Group at [email protected].

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
29

APPENDIX E – CDC Non-Disclosure Agreement

The success of CDC's operations depends upon the voluntary cooperation of States, of
establishments, and of individuals who provide the information required 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 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.
''I am aware that unauthorized disclosure of confidential information is punishable under Title
18, Section 1905 of the U.S. Code, which reads:
'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 an 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.'
''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 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
30

Date

APPENDIX F – Data Items for NPCR/SEER USCS Incidence Analytic Dataset

SEER*Stat Category

SEER*Stat Variable Name

Age at Diagnosis

Age recode with <1 year olds

Race, Sex, Year Dx, Registry,
County

Sex
Year of diagnosis
Addr at DX – state
*County at DX
*State-county
USCS standard
USCS9815
Race recode for USCS
Program
*Econ status
*Region/Division
Region
USCS9915
USCS0615
USCS1115
Origin recode NHIA (Hispanic, Non-Hisp)

Site and Morphology

Behavior Recode for Analysis
Primary Site – labeled
*Primary Site
Histologic Type ICD-O-3
*Behavior Code ICD-O-3
Grade
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 ICD-O-3/WHO 2008
ICCC site rec extended ICD-O-3/WHO 2008
AYA site recode/WHO 2008
Lymphoma subtype recode/WHO 2008
Behavior recode for analysis derived/WHO2008

Stage –
Historic]

LRD

[Summary

and

*Derived SS2000
*SEER Summary Stage 2000
*SEER Summary Stage 1977
Merged Summary Stage 2000

Therapy

*RX summ – surg prim site
*RX summ – chemo
*Merged radiation

Extent of Disease – CS

*CS extension
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
31

APPENDIX F – Data Items for NPCR/SEER USCS Analytic Dataset
*CS lymph nodes
*CS mets at dx
*CS site-specific factor 1
*CS site-specific factor 2
*CS site-specific factor 3
*CS site-specific factor 15
Laterality
Multiple Primary Fields

Sequence number - central

Race and Age (case data only)

Age at Diagnosis
*Race 1
*IHS Link

Geographic Locations

*Ruralurban continuum 2013
*Census Tract Poverty Indicator
*Ruralurban continuum 2013 calc

Dates

Year of Birth
Month of diagnosis

Other

Type of Reporting Source

Merged System-Supplied

Alcohol-related cancers
HPV-related cancers
Obesity-related cancers
Physical inactivity-related cancers
Tobacco-related cancers
State race eth suppress

* Variable is only available in the internal incidence database; it is not available in the NPCR Public Use Database

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
32

APPENDIX G – Data Items for NPCR Internal Survival Dataset
SEER*Stat Category

SEER*Stat Variable Name

Age at Diagnosis

Age recode with single ages and 85+

Race, Sex, Year Dx, Registry,
County

Sex
Year of diagnosis
Addr at DX – state
County at DX
State-county
NPCR project flag
Economic status 2015
Race and origin recode (NHW, NHB, NHAIAN, NHAPI,
Hispanic)
Race recode (White, Black, Other)
Year of diagnosis
Primary Site – labeled
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Grade
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 ICD-O-3/WHO 2008
Behavior recode for analysis derived/WHO2008

Site and Morphology

Stage –
Historic]

LRD

[Summary

and

Derived SS2000
SEER Summary Stage 2000
Merged Summary Stage 2000

Extent of Disease – CS

CS Site-Specific Factor 1
CS Site-Specific Factor 2
CS Site-Specific Factor 15
Laterality

Cause of Death (COD) and
Follow-up

Survival months – presumed alive
Survival months flag – presumed alive
Cause of death (ICD-10)
ICD revision number
Vital status
Follow-up source central
COD exclusion flag
Original vital status
Vital status recode (study cutoff used)
Cause of death recode
COD recode with Kaposi and mesothelioma
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
33

APPENDIX G – Data Items for NPCR Internal Survival Dataset

SEER*Stat Category

SEER*Stat Variable Name

Multiple Primary Fields

Sequence number - central

Race and Age (case data only)

Age at Diagnosis
Race 1
NHIA derived Hispanic origin

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 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
34

APPENDIX H – NPCR-CSS 308(d) Assurance of Confidentiality Statement

A 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, 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, and private physicians on all cancer patients diagnosed in the
state. This information includes patient demographics and cancer diagnosis and treatment data.
Each year, CDC requests cumulative data from central cancer registries. The variables reported
to CDC may vary from year to year. The cancer registries maintain these data permanently in
longitudinal databases that are used for public health surveillance, program planning and
evaluation, and research. CDC updates its longitudinal database each year with data received
from the States. These data are used by CDC scientists for routine cancer surveillance, program
planning and evaluation, and to provide data for research. 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.
Information received by CDC or its contractors as part of this 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.
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. 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.
Organizations (e.g., the North American Association of Central Cancer Registries, American
Cancer Society, and National Cancer Institute) are required to sign a detailed data release
agreement to have access to restricted release data.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
35

APPENDIX I – NPCR-CSS 308(d) Assurance of Confidentiality FAQ

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) (formally a separate agency) 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 within 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 currently there are approximately 20-5 active projects with 308(d) confidentiality
assurances. As a testament to the importance of this project to the mission of CDC, the 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 the CDC Office of General Counsel and the CDC 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
NPCR-CSS 2018 Data Release Policy
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1995–2017 Diagnosis Years
36

APPENDIX I – NPCR-CSS 308(d) Assurance of Confidentiality FAQ





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.
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 NPCRCSS 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. In 2006, 2010, and
2015, NPCR filed and received approval for continuation.
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 (e.g., Social Security number) or any combination of variables that
could be used to indirectly identify an individual. 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?
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
37

APPENDIX I – NPCR-CSS 308(d) Assurance of Confidentiality FAQ
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 that 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 surveillance system 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 publically or
through restricted means, and any data released to qualified researchers by CDC 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 (attachment I). 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
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
38

APPENDIX I – NPCR-CSS 308(d) Assurance of Confidentiality FAQ
employees must read and sign a data use agreement. Contract employees with access to NPCRCSS data are required to sign a confidentiality agreement.

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
39

APPENDIX J – Data Items for NPCR/SEER USCS Incidence Public Use Research Dataset
The research use NPCR/SEER USCS Incidence Public Use dataset contains individual casespecific data from the USCS dataset with enforced <16 cell suppression and case listing disabled.

SEER*Stat Category

SEER*Stat Variable Name

Age at Diagnosis

Age recode with <1 year olds

Race, Sex, Year Dx, Registry,
County

Sex
Year of diagnosis
Addr at DX – state
USCS standard
Race recode for USCS
Program
Region
USCS0115
USCS0615
USCS1115
Origin recode NHIA (Hispanic, Non-Hisp)

Site and Morphology

Primary site – labeled
Histologic type ICD-O-3
Grade
Diagnostic confirmation
ICD-O-3 hist/behavior, labeled
Site recode ICD-O-3/WHO 2008
ICCC site recode ICD-O-3/WHO 2008
ICCC site rec extended ICD-O-3/WHO 2008
AYA site recode/WHO 2008
Lymphoma subtype recode/WHO 2008
Behavior recode for analysis derived/WHO2008

Stage –
Historic]

LRD

[Summary

and

Merged summary stage 2000

Extent of Disease – CS

Laterality

Multiple Primary Fields

Sequence number – central

Race and Age (case data only)

NHIA derived Hisp origin

Dates

Year of birth
Month of diagnosis

Other

Type of reporting source

Merged System-Supplied

State race eth suppress
Alcohol-related cancers
HPV-related cancers
Obesity-related cancers
Physical inactivity-related cancers
Tobacco-related cancers
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
40

APPENDIX K – NPCR Research Data Use Agreement
National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End
Results (SEER) Incidence – U.S. Cancer Statistics
Public Use Research Database Data Use Agreement
For data submitted November, {year}

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 NPCR and SEER Incidence – U.S. Cancer Statistics Public Use Research
Databases are an unrestricted subset of data submitted to CDC and SEER and made available
only through the National Cancer Institute’s SEER*Stat statistical software.
CDC has obtained an assurance of confidentiality for NPCR pursuant to Section 308(d) of the
Public Health Service Act, 42 U.S.C. 242m(d). 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. All direct identifiers, as well as characteristics that might
easily lead to identification of individuals, are omitted from the NPCR and SEER Incidence –
U.S. Cancer Statistics Public Use Research Databases. Certain demographic information has
been included for research purposes; thus, all SEER*Stat 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 prior to receiving access to the NPCR and
SEER Incidence – U.S. Cancer Statistics {year}–{year} and {year}– {year} Public Use Research
Databases. Please initial after each statement to indicate agreement.
As the recipient of access to NPCR and SEER Incidence – U.S. Cancer Statistics Public Use
Research Databases:
 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 all NPCR data are owned by the states and territories. The states and
territories have established agreements with CDC regarding the use and dissemination of
the data. Initials: ______



I will not use or permit others to use the analytic results in any way other than for
statistical reporting and analysis. Initials: ______



I will use appropriate safeguards to prevent use or disclosure of the information other
than as provided for by this agreement. Initials: ______



I will ensure all members of the research team who have access to the NPCR and SEER
Incidence – U.S. Cancer Statistics Public Use Research Database through SEER*Stat
have signed this agreement. Initials: ______

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
41

APPENDIX K – NPCR Research Data Use Agreement


I will not attempt to link or permit others to link NPCR and SEER Incidence – U.S.
Cancer Statistics Public Use Research Data with individually identifiable records from
any other dataset without CDC approval. Initials: ______



I will not attempt to use the analytic results or permit others to use them to learn the
identity of any person or establishment included in any dataset. Initials: ______



I will take the following actions if the identity of any person or establishment is
discovered inadvertently:
o Make no use of this knowledge.
o Notify CDC by sending an e-mail to [email protected].
o As requested by CDC, safeguard or destroy the information that identifies an
individual or establishment.
o Inform no one else of the discovered identity. Initials: ______



I will make every effort to release all statistical information in such a way as to avoid
inadvertent disclosure by:
o Ensuring that no data on an identifiable case can be derived through subtraction or
other calculation from the combination of tables in the given publication. Initials:
______
o Ensuring that no data permit disclosure when used in combination with other
known data. Initials: ______
o Not disclosing or otherwise making public data on any unit smaller than 16. If the
total number of cases in a cell is fewer than 16, the cell data will be suppressed in
oral and written presentations. Initials: ______



I have read the data documentation file and have an understanding of the data available in
the database and the restrictions related to their use. If I have questions regarding my
analytic approach, I will contact CDC NPCR ([email protected]) for assistance. Initials:
______



I am familiar with the use of SEER*Stat in analyzing data or will complete the needed
training. Initials: ______



I understand that I am responsible for the results of my own analysis. The findings and
conclusions resulting from the analysis of these data are those of the authors and do not
necessarily represent the official position of CDC. 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 CDC’s
National Program of Cancer Registries (NPCR) and/or NCI’s Surveillance,
Epidemiology, and End Results (SEER) Program and submitted to CDC and NCI
in November {date}. Initials: ______
As appropriate, I will cite the data –
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
42

APPENDIX K – NPCR Research Data Use Agreement
For the {date}-{date}database: National Program of Cancer Registries and
Surveillance, Epidemiology, and End Results SEER*Stat Database: NPCR and
SEER Incidence – U.S. Cancer Statistics Public Use Research Database, Nov
{year} submission ({year}-{year}), United States Department of Health and
Human Services, Centers for Disease Control and Prevention and National Cancer
Institute. Released {date}, based on November {year} submissions. Available at
www.cdc.gov/cancer/public-use.
For the {year}-{year} database: National Program of Cancer Registries and
Surveillance, Epidemiology, and End Results SEER*Stat Database: NPCR and
SEER Incidence – U.S. Cancer Statistics Public Use Research Database, Nov
{year} submission ({year}-{year}, United States Department of Health and
Human Services, Centers for Disease Control and Prevention and National Cancer
Institute. Released {date}, based on November {year}submissions. Available at
www.cdc.gov/cancer/public-use.
Initials: ______

________________________________________________

______________________________

Signature

Date

Name: ____________________________________________________________________________________

Title and organization: _______________________________________________________________________

SEER*Stat username: _______________________________________________________________________
Telephone number: _________________________

E-mail address: ________________________________

Please complete the above fields, sign and date the agreement, and email both pages to
[email protected].

Research Data Use Agreement (November 2015 Submission)
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
43

Updated 12/2014

APPENDIX L – NPCR Data at the NCHS RDC Q&A
Can you summarize what CDC is planning to do?
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 will be available through the NCHS RDC only after the standard data quality reviews that
occur as part of the preparation for USCS and State Cancer Profiles.
The use of the NCHS RDC to manage data access will provide the highest level of data security
and protection of confidentiality that is available for analysis of data. Any researcher must
submit a proposal which will be reviewed and approved by CDC and 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 will leave the NCHS RDC facilities.

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, staff at NCHS compile statistical information to guide
actions and policies to improve the health of our people. More information about NCHS is
available at: http://www.cdc.gov/nchs/about.htm.

What is the Research Data Center (RDC)?
The NCHS RDC began in 1998 and has a long-standing history of managing access to health and
vital statistics data through a rigorous proposal review process as well as review of the statistical
output. The NCHS RDC mission is to give public access to the 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. Once
the analysis is completed, the data extract is archived for 2 years and then destroyed.
There are currently three modes of access through the NCHS RDC, each with specific
restrictions. Access is available on-site at two locations (Hyattsville, MD and Atlanta, GA), nine
Census RDCs, or through remote electronic access. More information about the NCHS RDC is
available at: http://www.cdc.gov/rdc/
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
44

APPENDIX L – NPCR Data at the NCHS RDC Q&A

Why does CDC use the NCHS RDC?
Maintaining confidentiality is the primary objective of the NCHS RDC. Staff at NCHS RDC
have statistical expertise to address confidentiality and disclosure risk. Using the NCHS RDC
will allow CDC to comply with the Assurance of Confidentiality [308(d)] that was obtained for
the NPCR-CSS data. All researchers must take 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:
http://www.cdc.gov/rdc/B4ConfiDisc/CfD400.htm.

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 re-direction as
needed should be the norm. More information about the review process is available at:
http://www.cdc.gov/rdc/B3Prosal/PP300.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.
The use of the NCHS RDC to host the NPCR data is a win-win opportunity because of the
confidence in knowing that the data are being used correctly and safely, while at the same time
making the data available for external researchers in an appropriate way. In addition, this
approach will not overtax resources here in the Branch 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.

Who has access to the data and at what level?
The NCHS RDC analysts will have access to the individual record level data since it is easier to
create an analytic dataset using these data. The NCHS RDC analysts will be bound by the same
data use agreements that CDC staff sign on an annual basis. Researchers with approved
proposals will be able to conduct analyses through the NCHS RDC on the created dataset or have
the NCHS RDC analyst do the analysis for them. However, they will not be able to download
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
45

APPENDIX L – NPCR Data at the NCHS RDC Q&A
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 would have direct access to the dataset itself including the ability to
download the data and create a listing of individual record level data and all variables in the
RADS.
Researchers have several possible modes of access to the data set created for their specific
research proposal. More information is available at:
http://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 email. No individual record level data are released to the researcher.

Will the CCRs be able to decide whether their data will be available through the NCHS
RDC?
Starting with DP17-1701, participation in all CDC-created and hosted analytic datasets and webbased data query systems, as outlined in the annual NPCR-CSS Data Release Policy, is a
required strategy. [DP17-1701, 2. CDC Project Description, a. Approach, iii. Strategies and
Activities, Program 3: National Program of Cancer Registries (NPCR) – Component 1, Strategy
3 Cancer Data and Surveillance (Domain 1), Data Submission (page 19)] 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
[NAACCR#90]) is to be available for use in the NCHS RDC?
Starting with DP17-1701, participation in all CDC-created and hosted analytic datasets and webbased data query systems, as outlined in the annual NPCR-CSS Data Release Policy, is a
required strategy. [DP17-1701, 2. CDC Project Description, a. Approach, iii. Strategies and
Activities, Program 3: National Program of Cancer Registries (NPCR) – Component 1, Strategy
3 Cancer Data and Surveillance (Domain 1), Data Submission (page 19)] Therefore, data from
all CCRs meeting eligibility requirements are included. County data will be used only in
approved analyses and in the following ways:


Used as a linkage variable (linkage to census data, for example) only by the NCHS RDC
analyst. The county variable will not be available to the researcher but the NCHS RDC
analyst would use it to create a linked dataset and then remove the county variable.
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
46

APPENDIX L – NPCR Data at the NCHS RDC Q&A



Included as a confounder or other control variable, but no data are presented by county.
The NCHS RDC analyst will create dummy variables to mask the actual county name.



Used in geographically aggregated form such as large metropolitan statistical areas (e.g.,
those with a population of 1 million or larger), multi-county regions, or geographical
areas (e.g., Appalachia or IHS Contract Health Services Delivery Areas (CHSDA)
counties). It will be 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 also
includes the NCHS RDC analyst and the confidentiality officer, who will be 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:
http://www.cdc.gov/rdc/B3Prosal/PP340.htm.
NPCR will obtain comments on each proposal from CCRs through the NPCR Central Cancer
Registry Council.

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?
Yes. NPCR staff have worked with NCHS RDC staff to provide appropriate training for these
data preparation and analysis tools. All previous analyses performed on the data at the NCHS
RDC have required a SAS dataset and is the primary data source being used.

Will researchers have access to SEER*Stat?
Yes. It is expected that researchers will know the basics of the analyses that they wish to carry
out. NCHS RDC staff will be available for limited consultation. Since cell phones or access to
the Internet are not available inside the NCHS RDC, all SEER*Stat tutorials
(http://seer.cancer.gov/seerstat/tutorials/) would need to be completed beforehand.

What suppression rules will be used for the RADS?
The same suppression rules that are used for United States Cancer Statistics. More detailed
information is available at:
https://www.cdc.gov/cancer/npcr/uscs/technical_notes/stat_methods/suppression.htm.
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
47

APPENDIX L – NPCR Data at the NCHS RDC Q&A
In addition, the suppression rules for Asians/Pacific Islanders (A/PI) and American
Indians/Alaska Natives (AI/AN) will also apply. The data for A/PI and AI/AN will be presented
only for states or counties with at least 50,000 population because of concerns regarding possible
misclassification of race data and the relatively small sizes of these populations in the United
States.
Wouldn’t it be better for researchers to contact CCRs directly for linkage studies?
CDC doesn’t collect personal identifiers like name or social security number.
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

Will IRB review be required for each proposal? If not, will NCHS require the researcher 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 (http://www.cdc.gov/rdc/Data/B4/DesignatedAgent.pdf), 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, there is one office that 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 from their own institution, but it will not be a
requirement in the application process given the ERB extension that the NCHS RDC provides.

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?
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
48

APPENDIX L – NPCR Data at the NCHS RDC Q&A
Access to the CER dataset are 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 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
49

APPENDIX M – Data Items for Restricted-Access Dataset (RDC)
The restricted access dataset are individual case-specific data derived from the NPCR-CSS
dataset. The data is available to researchers at NCHS Research Data Centers as a SAS file. SAS
files are created specifically for each project’s needs. The data items that may be requested by
researcher are listed below.
Variable Name

Alternate Patient ID Number
Address at Diagnosis – State
Address at Diagnosis – County*
USCS Standard
USCS9915
USCS1115
USCS9815
USCS0615
Address at Diagnosis – Census Region
Race 1
Race 2
Race Recode
Econ Status
State race eth suppress
Spanish/Hispanic Origin
NHIA Derived Hispanic Origin
IHS Link
Sex
Age at Diagnosis**
Age Recode
Birth Date***
Sequence Number – Central
Date of Diagnosis****
Primary Site
Laterality
Grade
Diagnostic Confirmation
Type of Reporting Source
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Behavior Recode for Analysis
Primary Site Recode
Primary Site Recode with Mesothelioma and Kaposi Sarcoma
SEER International Classification of Childhood Cancer (ICCC) Recode
SEER Summary Stage 2000
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
50

APPENDIX M – Data Items for Restricted-Access Dataset (RDC)
SEER Summary Stage 1977
RX Summ – Surg Prim Site
Merged radiation
CS Extension
CS Lymph Nodes
CS Mets at DX
CS Site-Specific Factor 1
CS Site-Specific Factor 2
CS Site-Specific Factor 3
CS Site-Specific Factor 15
CS Site-Specific Factor 25
CS Version Input Original
CS Version Derived
CS Version Input Current
Derived SS2000
Merged Summary Stage 2000
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) used as a linkage
variable (linkage to census data, for example) only by the NCHS RDC analyst; b) included as a
confounder or other control variable, but no data are presented by county; c) used in geographically
aggregated form such as large metropolitan statistical areas (e.g., those with a population of 1 million or
larger), multi-county regions, or geographical areas (e.g., 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 Levels of Data Access
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
51

APPENDIX O – Data Items for NPCR/SEER USCS Delay Adjusted Database
Internal Analytic Datasets
Dataset
Includes: Record level

Federal/Trusted Partners

External Restricted Access

information, Survival dataset,
Prevalence dataset, Delay
Adjusted dataset
Criteria: USCS criteria met, <6
cases cell suppression,
complementary cell suppression
Availability: DCPC, SEER, IHS
researcher or contractor

Includes: Record level
information; may include
Survival dataset, Prevalence
dataset, Delay Adjusted dataset
Criteria: USCS criteria met, <16
cases cell suppression,
complementary cell suppression
Availability: ACS, CBTRUS, IACR,
CONCORD, AHRQ, OWH, CDI,
EPHTN

Includes: Includes record-level
information
Criteria: USCS criteria met
Availability: Researcher outside
DCPC through NCHS RDC

Access: Signed Data Use
Agreement and NonDisclosure Agreement,
Assurance of Confidentiality
training

Access: Signed Data Use
Agreement and NonDisclosure Agreement; may
include MOU

Access: Proposal submitted
to NCHS RDC, signed Data
Use Agreement and NonDisclosure Agreement

Is a state or
county used
and identified?

NPCR and
RDC review;
may include
state

Yes

No

Data published
in USCS?

No
Yes
No additional permission
needed; should document its
use and include proper
acknowledgment

States notified of
study results

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
52

APPENDIX O – Data Items for NPCR/SEER USCS Delay Adjusted Database
NPCR-CSS Levels of Data Access
Public Use Datasets
CDC WONDER
Includes: State and MSA levels,
no record-level information
Criteria: USCS criteria met,
permission provided on Dataset
Participation Agreement, <16
cases cell suppression enforced
Availability: Public

State Cancer Profiles

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

No additional permission
needed; should document its
use and include proper
acknowledgment

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 after signed
Data Use Agreement and NonDisclosure Agreement, annual
agreements required

NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
53

APPENDIX O – Data Items for NPCR/SEER USCS Delay Adjusted Database

SEER*Stat Category

SEER*Stat Variable Name

Age at Diagnosis

Delay age Age recode with single ages and 85+
Age recode with <1 year olds

Race, Sex, Year Dx, Registry,
County

Sex
Year of diagnosis
Addr at DX – state
County at DX
State-county

Required Delay Fields

Delay factorNPCR project flag
Delay siteEconomic status 2015
Race and origin recode (NHW, NHB, NHAIAN, NHAPI,
Hispanic)
Delay race (All, Race recode (White, Black, AIAN,
CHSDA, API, Hisp, Non-HispOther)
Year of diagnosis

Site and Morphology

Primary Site – labeled
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Grade
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 ICD-O-3/WHO 2008

Site and Morphology

Behavior recode for analysis derived/WHO2008

Stage –
Historic]

LRD

[Summary

and

Derived SS2000
SEER Summary Stage 2000
Merged Summary Stage 2000

Extent of Disease – CS

CS Site-Specific Factor 1
CS Site-Specific Factor 2
CS Site-Specific Factor 15
Laterality

Cause of Death (COD) and
Follow-up

Survival months – presumed alive
Survival months flag – presumed alive
Cause of death (ICD-10)
ICD revision number
Vital status
Follow-up source central
COD exclusion flag
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June 2018
1995–2017 Diagnosis Years
54

APPENDIX O – Data Items for NPCR/SEER USCS Delay Adjusted Database

SEER*Stat Category

SEER*Stat Variable Name
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

Race and Age (case data only)

Age at Diagnosis
Race 1
NHIA derived Hispanic origin

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 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
55

APPENDIX P – Data Items for NPCR Prevalence Database

SEER*Stat Category

SEER*Stat Variable Name

Age at Prevalence Date

Age at Prevalence Data (Calculated)

Age at Diagnosis

Age recode with single ages and 85+

Race, Sex, Year Dx, Registry,
County

Sex
Year of diagnosis
Addr at DX – state
County at DX
State-county
NPCR project flag
Economic status 2015
Race and origin recode (NHW, NHB, NHAIAN, NHAPI,
Hispanic)
Race and origin recode (NHW, NHB, NHAIAN, NHAPI,
Hispanic)
State
County
Race recode (White, Black, Other)
Year of diagnosis
Primary Site – labeled
Histologic Type ICD-O-3
Behavior Code ICD-O-3
Grade
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 ICD-O-3/WHO 2008
Behavior recode for analysis derived/WHO2008

Site and Morphology

Stage –
Historic]

LRD

[Summary

and

Derived SS2000
SEER Summary Stage 2000
Merged Summary Stage 2000

Extent of Disease – CS

CS Site-Specific Factor 1
CS Site-Specific Factor 2
CS Site-Specific Factor 15
Laterality

Cause of Death (COD) and
Follow-up

Survival months – presumed alive
Survival months flag – presumed alive
Cause of death (ICD-10)
ICD revision number
Vital status
NPCR-CSS 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
56

APPENDIX P – Data Items for NPCR Prevalence Database

SEER*Stat Category

SEER*Stat Variable Name
Follow-up source central
COD exclusion flag
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

Race and Age (case data only)

Age at Diagnosis
Race 1
NHIA derived Hispanic origin

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 2018 Data Release Policy
June 2018
1995–2017 Diagnosis Years
57