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North American Association of
Central Cancer Registries

Standards for Cancer Registries
Volume II

Data Standards and Data Dictionary

Twenty Second Edition
Version 21
Implementation: January 1, 2021


Edited By
Monica Thornton


August 2020
(Revised August, 2020, September 2020, October 2020)



Sponsoring Organizations

American College of Surgeons Cancer Programs
Canadian Partnership Against Cancer
Centers for Disease Control & Prevention
National Cancer Institute
National Cancer Registrars Association
Public Health Agency of Canada

Sponsor with Distinction

American Cancer Society

Edited By

Monica Thornton
North American Association of Central Cancer Registries, Inc. (NAACCR).

Comments and suggestions on this and other NAACCR standards documents are welcome. Please send your comments to the Editor or any member of the NAACCR Board of Directors.

The other volumes in the series, Standards for Cancer Registries, are:

Copies of all standards documents can be viewed or downloaded from NAACCR's website at: https://www.naaccr.org/.

Suggested citation

Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Version 21, 22nd ed. Springfield, Ill.: North American Association of Central Cancer Registries, August 2020.

Acknowledgment

We are very grateful to the members of NAACCR's Uniform Data Standards Work Group for their dedication and the many hours contributed to prepare this document.

Funding for this project was made possible in part by a contract with Federal funds from the National Cancer Institute, National Institutes of Health, Department of Health & Human Services under Contract number HHSN261201400004I / HHSN26100002. Additionally, funding for this project was made possible in part by a cooperative agreement with Federal funds from the Centers for Disease Control and Prevention Cooperative Agreement number 5NU58DP006458. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCI and CDC. The NAACCR Board of Directors adopted these standards in August 2020.

NAACCR BOARD OF DIRECTORS
2020-2021


President:
Randi K. Rycroft, MSPH, CTR

Cancer Data Registry of Idaho
Telephone: (208) 489-1386
Email: rrycroft@teamiha.org

Past-Elect:
Winny Roshala, BA, CTR

Cancer Registry of Greater California
Telephone: (916) 779-0313
Email: wroshala@crgc-cancer.org

Treasurer:
Maria J. Schymura, PhD

New York State Cancer Registry
Telephone: (518) 474-2255
Email: maria.schymura@health.ny.gov

Executive Director:
Betsy A. Kohler, MPH, CTR

NAACCR, Inc.
Telephone: (217) 698-0800 ext. 2
Email: bkohler@naaccr.org


Representative, Sponsoring Member Organizations:

Lori Swain, BA, MS

National Cancer Registrars Association
Telephone: (703) 299-6640 ext. 313
Email: lswain@ncra-usa.org

 

Representatives-at-Large:
Isaac Hands, MPH
Kentucky Cancer Registry
Telephone: (859) 218-3196
Email: isaac@kcr.uky.edu


Monique Hernandez, PhD

Florida Cancer Data System
Telephone: (562) 556-5298
Email: mhernandez5@med.miami.edu

Mary Jane King
Ontario Cancer Registry, Ontario Health
Telephone: (416) 217-1424
Email: maryjane.king@ontariohealth.ca


Monique Hernandez
Florida Cancer Data System
Telephone: (562) 556-5298
Email: mhernandez5@med.miami.edu

Lorraine Shack
Alberta Cancer Registry
Telephone: (403) 973-0320
Email: lorraine.shack@ahs.ca


Kevin C. Ward, PhD, MPH, CTR
Georgia Cancer Registry
Telephone: (404) 727-8455
Email: kward@emory.edu

 

UNIFORM DATA STANDARDS WORK GROUP
2018-2020

The Uniform Data Standards Work Group provides a formal mechanism to review and recommend proposed changes in data codes and/or the addition of new items submitted by NAACCR members to ensure that data remain comparable among central registries and other standard setters. Further, the WG provides a formal mechanism for reviewing and recommending edits of NAACCR-approved data items.

Susanne Schwartz, MS, CTR
Co-Chair

New Jersey State Cancer Registry
Telephone: (609) 633-0500
Email: suzanne.schwartz@doh.nj.gov

 

Jeannette Jackson-Thompson, MSPH, PhD
Co-Chair
Missouri Cancer Registry and Research Center
Telephone: (573) 882-7775
Email: Jacksonthompsonj@health.missouri.edu

 

STANDARD SETTING ORGANIZATIONS

American Joint Committee on Cancer (AJCC)
633 N. Saint Clair Street
Chicago, IL 60611-3211
Telephone: (312) 202-5290
Email: ajcc@facs.org
Website: www.cancerstaging.org

Centers for Disease Control and Prevention (CDC)
National Program of Cancer Registries (NPCR)
Division of Cancer Prevention and Control
National Center for Chronic Disease
Prevention and Health Promotion
4770 Buford Hwy, NE
MS F76
Atlanta, GA 30341-3717
Telephone: (770) 488-4783
Fax: (770) 488-4759
Website: www.cdc.gov/cancer/npcr

Canadian Council of Cancer Registries (CCCR)
c/o Statistics Canada
Canadian Cancer Registry
Health Statistics Section
Health Statistics Division
Main Building, Room 2200, Section F
120 Parkdale Avenue
Ottawa, ON K1A 0T6
Telephone: (800) 263-1136
Email: infostats@statcan.gc.ca
Website: www.statcan.gc.ca

Commission on Cancer (CoC)
633 N. Saint Clair Street
Chicago, IL 60611-3211
Telephone: (312) 202-5085
Email: CoC@facs.org
Website: https://www.facs.org/quality-programs/cancer

National Cancer Institute SEER Program
US Mail:
National Institutes of Health
National Cancer Institute
Surveillance Research Program
Division of Cancer Control and Population Sciences
9609 Medical Center Drive
Bethesda, MD 20892
Courier services:
Rockville, MD 20850
Phone: (240) 276-6740
Fax: (240) 276-7908
Email: cancer.gov_staff@mail.nih.gov
Website: www.seer.cancer.gov

National Cancer Registrars Association (NCRA)
1340 Braddock Place #203
Alexandria, VA 22314
Telephone: (703) 299-6640
Fax: (703) 299-6620
Email: info@ncra-usa.org
Website: www.ncra-usa.org

North American Association of Central Cancer Registries, Inc. (NAACCR)
2050 West Iles Ave, Suite A
Springfield, IL 62704-4194
Telephone: (217) 698-0800
Fax: (217) 698-0188
Email: info@naaccr.org
Website: www.naaccr.org

PREFACE TO THE TWENTY SECOND EDITION

NAACCR continues with its strong commitment to maintain standardization of cancer registry data. The collaboration and cooperation of our membership and sponsoring members is vital for achieving consensus to collect timely and accurate data. Standardization of cancer registry data is a core component of cancer registration and surveillance and provides the foundation for developing comparable data among registries throughout North America. Standardization also allows data from different registries to be used for comparison of variations in cancer rates among different populations and across geographic boundaries.

The Standards for Cancer Registries, Data Standards and Data Dictionary, Version 21 includes new data items to collect site-specific data, neoadjuvant therapy, post therapy yc, surname and API versioning; and, it includes revisions to existing data items. All revisions can be easily identified in Appendix F, Tables and Data Dictionary Revisions.

A major change in Version 21 is that the XML data exchange format transition period ended; hence, the fixed-width format is no longer supported as it has been replaced by the XML specification. As XML does not rely on starting and ending positions to be specified, all references to column positions (start and end) have been removed in the Version 21 Data Standards and Data Dictionary.

I would like to thank Suzanne Schwartz and Jeannette Jackson-Thompson Co-chairs of the Uniform Data Standards Work Group (UDS WG), for their leadership and dedication. I would also like to thank the UDS WG for sharing their valuable time and knowledge to review all of the revisions to the Data Standards and Data Dictionary. A special acknowledgement goes to Monica Thornton for her attention to detail and diligent efforts in bringing this document to completion.



Lori A. Havener, CTR
Program Manager of Standards
NAACCR

CHAPTER I:

PROBLEM STATEMENT, GOALS, AND SCOPE OF THIS DOCUMENT

THE PROBLEM

In the late 1980s, increased efforts to pool data collected by different cancer registries drew attention to problems resulting from insufficient data standardization. This lack of standardization had a substantial cost and limited more widespread use of valuable data. Three groups especially felt the impact: state registries receiving data from hospital registries, the NAACCR Data Evaluation and Publication committee, and the Commission on Cancer's (CoC) National Cancer Data Base (NCDB).

The lack of standardization took many forms. Data items used by different registries or software systems varied in their definitions and codes, even when they had the same name and were intended to represent the same information. Blanks, dashes, and defined codes were all used to indicate “unknown” data. Other substantial discrepancies were less easy to detect and correct. Hospitals and software providers faced conflicting standards and requirements when they were both reporting to a central registry and maintaining a database consistent with CoC standards.

THE SOLUTION

Many NAACCR sponsoring organizations, including the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), and CoC, recognized increasing standardization as an essential step in decreasing the costs associated with data collection, making more efficient use of increasingly limited human resources needed for data collection, management, and analysis, and obtaining more useful data that could be compared across registries and geographic areas.

Preparation of a statement of consensus on data standards for cancer registries was proposed by the NAACCR Data Exchange Committee (originally called the Data Exchange Standards Committee) spearheaded by NCDB, and the task fell to the newly formed Committee on a Unified Database which later morphed into NAACCR's Uniform Data Standards Committee, now called the Uniform Data Standards Work Group. Later, the CDC entered into an agreement with NAACCR, and one project under that agreement was the preparation of broader standards for population-based cancer registries. These efforts were complementary. Continued support from the NCI, the CoC, and the CDC has enabled continued development and maintenance of standards. The results of these efforts are the following standards documents published to date:

NAACCR Data Exchange Standard Formerly NAACCR Standards Volume I:

  • Depry F, Hands I, Pinder R, Yoder V, Havener L, (eds). NAACCR Data Exchange Standard. Springfield, IL: North American Association of Central Cancer Registries, July 2020 https://www.naaccr.org/xml-data-exchange-standard/.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 18. Springfield, Ill.: North American Association of Central Cancer Registries, March 2018. Revised May 2018.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 16. Springfield, Ill.: North American Association of Central Cancer Registries, November 2015.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 15. Springfield, Ill.: North American Association of Central Cancer Registries, September 2014.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 14. Springfield, Ill.: North American Association of Central Cancer Registries, November 2013.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 13. Springfield, Ill.: North American Association of Central Cancer Registries, May 2012.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 12.2. Springfield, Ill.: North American Association of Central Cancer Registries, June 2011.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 12.1. Springfield, Ill.: North American Association of Central Cancer Registries, June 2010.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 12. Springfield, Ill.: North American Association of Central Cancer Registries, February 2009, revised January 2010.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 11.3. Springfield, Ill.: North American Association of Central Cancer Registries, June 2008.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 11.2. Springfield, Ill.: North American Association of Central Cancer Registries, June 2007.
  • Havener LA (ed). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 11.1. Springfield, Ill.: North American Association of Central Cancer Registries, June 2006.
  • Havener LA, Abe T, Bushhouse S, Gordon B, Hamlyn E, Hill KB, Hurlbut AA, Menck HR (eds). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 11. Springfield, Ill.: North American Association of Central Cancer Registries, November 2004.
  • Havener L, Abe T, Bushhouse S, Gordon B, Hill K, Hurlbut A, Seiffert J (eds). Standards for Cancer Registries Volume I: Data Exchange Standards and Record Descriptions, Record Layout Version 10.1. Springfield, Ill.: North American Association of Central Cancer Registries, November 2003.
  • Abe T and Seiffert J (eds). Standards for Cancer Registries, Volume I, Data Exchange Standards and Record Description. Record Layout Version 9. Springfield, Ill.: North American Association of Central Cancer Registries, September 7, 2000.
  • North American Association of Central Cancer Registries. Standards for Cancer Registries, Volume I, Data Exchange Standards and Record Description. Version 7. Sacramento, Cal.: North American Association of Central Cancer Registries, January 1, 1999.
  • North American Association of Central Cancer Registries. Standards for Cancer Registries, Volume I, Data Exchange Standards and Record Description. Version 6. Sacramento, Cal.: North American Association of Central Cancer Registries, March 20, 1998.
  • Gordon B and Seiffert J (eds). Standards for Cancer Registries, Volume I, Data Exchange Standards and Record Description. Version 5.1. Sacramento, Cal.: North American Association of Central Cancer Registries, 1997.
  • Gordon B (ed). Standards for Cancer Registries, Volume I, Data Exchange Standards and Record Description. Version 3.0. Sacramento, Cal.: American Association of Central Cancer Registries, February 1994.

NAACCR Standards Volume II:

  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Twenty Second Edition. Record Layout Version 21. Springfield, Ill.: North American Association of Central Cancer Registries, August 2020.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Twenty First Edition. Record Layout Version 18. Springfield, Ill.: North American Association of Central Cancer Registries, February 2018.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Twentieth Edition. Record Layout Version 16. Springfield, Ill.: North American Association of Central Cancer Registries, September 2015, revised October 2015, revised November 2015.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Nineteenth Edition. Record Layout Version 15. Springfield, Ill.: North American Association of Central Cancer Registries, October 2014, revised October 2014, revised February 2015.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Eighteenth Edition. Record Layout Version 14. Springfield, Ill.: North American Association of Central Cancer Registries, September 2013, revised November 2013.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Seventeenth Edition. Record Layout Version 13. Springfield, Ill.: North American Association of Central Cancer Registries, June 2012, revised March 2013.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Sixteenth Edition. Record Layout Version 12.2. Springfield, Ill.: North American Association of Central Cancer Registries, June 2011, revised March 2012.
  • Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Fifteenth Edition. Record Layout Version 12.1. Springfield, Ill.: North American Association of Central Cancer Registries, June 2010, revised December 2010.
  • Thornton ML, O'Connor, LC (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Fourteenth Edition. Record Layout Version 12. Springfield, Ill.: North American Association of Central Cancer Registries, February 2009, revised August 2009.
  • Havener LA, Thornton ML (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Thirteenth Edition. Record Layout Version 11.3. Springfield, Ill.: North American Association of Central Cancer Registries, April 2008.
  • Havener LA, Hofferkamp J (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Twelfth Edition. Record Layout Version 11.2. Springfield, Ill.: North American Association of Central Cancer Registries, April 2007.
  • Havener LA, Hultstrom D (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Eleventh Edition. Record Layout Version 11.1. Springfield, Ill.: North American Association of Central Cancer Registries, April 2006.
  • Havener LA, Hultstrom D (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Tenth Edition. Record Layout Version 11. Springfield, Ill.: North American Association of Central Cancer Registries, October 2004.
  • Havener LA, Hultstrom D (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Ninth Edition. Record Layout Version 10.2. Springfield, Ill.: North American Association of Central Cancer Registries, March 2004.
  • Hultstrom D, Havener LA (eds). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Eighth Edition. Record Layout Version 10.1. Springfield, Ill.: North American Association of Central Cancer Registries, March 2003.
  • Hultstrom D (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Seventh Edition. Record Layout Version 10. Springfield, Ill.: North American Association of Central Cancer Registries, March 2002.
  • Hultstrom D (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Sixth Edition. Record Layout Version 9.1. Springfield, Ill.: North American Association of Central Cancer Registries, March 4, 2001.
  • Johnson CH (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Fifth Edition. Version 9. Sacramento, Cal.: North American Association of Central Cancer Registries; May 15, 2000.
  • Johnson CH (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Fourth Edition. Version 8. Sacramento, Cal.: North American Association of Central Cancer Registries; March 30, 1999.
  • Seiffert J (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Changed Data Dictionary Entries Only. Sacramento, Cal.: North American Association of Central Cancer Registries; April 13, 1998.
  • Seiffert J (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Third Edition. Version 6. Sacramento, Cal.: North American Association of Central Cancer Registries; March 20, 1998.
  • Seiffert J (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Second Edition. Version 5.1. Sacramento, Cal.: North American Association of Central Cancer Registries; March 14, 1997.
  • Menck HR and Seiffert J (eds). Standards for Cancer Registries, Volume II: Data Standards and Data Dictionary. Version 3.0. Sacramento, Cal.: American Association of Central Cancer Registries; February 14, 1994.

NAACCR Standards Volume III:

NAACCR Standards Volume IV:

NAACCR Standards Volume V:

GOAL OF THIS DOCUMENT

The goal of this volume is to define NAACCR cancer registration data standards for use by central registries, hospital-based registries, and other groups in North America to abstract cancer diagnosed on or after January 1, 2021.

Objectives of the standardization effort, and this document, are to:

This document will be used by new and existing facility-based and central cancer registries to ensure that their program's standard definitions and codes are consistent with those used by regional and national databases. Other potential users include registry software providers and those using registry data, especially if they are combining data from multiple sources or exchanging data. National standard-setting groups, such as CoC, CDC, NAACCR, NCI and the Canadian Council of Cancer Registries (CCCR) will also benefit.

This Data Dictionary describes all current data items; those that are new or have been modified since the preceding Data Dictionary are listed in Appendix F. Highlighting in Chapter X also indicates changes.

The present volume uses the same structure and philosophy as NAACCR's data exchange standards. Where a standard exists for an item or type of data, the standard is incorporated by reference. Where a variety of standards are in use, alternate coding schemes accommodate them, but the different coding schemes are recorded separately, or another data field is used to indicate which coding standard was used.

SCOPE OF THIS DOCUMENT: WHAT STANDARDS ARE INCLUDED?

The present document is limited to standards regarding data, rather than procedures. More specifically, it focuses on a subset of possible data standards that NAACCR considers important to establish. These include:

  • Reportability
    Reportability defines the rules for inclusion of specific types of tumors in the registry (see Chapter III).
  • Data Items or Elements To Be Included
    Some data items are required or recommended by particular standard setters while others are optional or are retained because they were abstracted in the past. Chapter VIII specifies the required status for each data item.

    Example: “Sex” is classified as a required standard data element by all standards setters represented in Chapter VIII.
  • Standardized Item Numbers and Item Names
    For ease and consistency of reference, all items are assigned both numbers and names (e.g., the item “Sex” is assigned the item number 220). The item number is intended to be permanent and will not change in future NAACCR standards publications. Assignment of permanent numbers was necessary because standard-setting organizations have changed item names over time or have applied similar names to items with different definitions. Item numbers allow the required precision of reference. When data items are deleted, the item numbers are retired and will never be reused for a different data item. Some numbers were intentionally skipped to allow the insertion of related items in the future. Ranges of available data item numbers have been assigned to different uses, as follows:

Refer to Data Exchange Standard, XML Specification for Cancer Registry Records1or Data Standards & Data Dictionary, Volume II, Version 21, Chapter X for additional information on record layouts.

Where possible, the NAACCR item name is the same as that used by the standard setter. However, the following constraints are placed on the names:

  • Length
    Beginning with Standards Volume II Version 18 the data item name length is limited to 50 characters. Previously the data item name length was limited to 25 characters because that had been the maximum length for item names in the EDITS software system (see Chapter IV). Standardized abbreviations, punctuation, and spacing have been used (e.g., the word “first” is entered “1st,” “treatment” is “RX,” and so on). Other limitations will be imposed as needed. Thus, item names will be identical in this data standards volume and the NAACCR Metafile of standard edits.
  • Consistency
    Consistency was a goal in formatting names and in using special characters. The character “--” is used to distinguish among item names built on the same stem name.

    Example: “Sequence Number--Hospital” and “Sequence Number--Central” are the names of two differently defined sequence numbers
  • Interrelated Items, Fields, and Subfields
    To make the relationship among items more apparent, a constant term was consistently added to the stem of the name.

    Example: Names of treatment fields related to radiation therapy begin with “Rad,” so that in a list of item names they will appear together:
      Rad--No of Treatment Vol
      Rad--Elapsed RX Days
  • Record Layout/Data Exchange
    Starting with Version 21 the record layout / data exchange will be collected and maintained in an XML format, the former fixed-width positions of data items are no longer defined. See this link to get the latest information on the XML format https://www.naaccr.org/xml-data-exchange-standard/.

    Example: “Sex” is item [220] and was in character position 222 in the NAACCR Data Exchange Record Layout Version 18. However, NAACCR records will be converted from a flat file with a need for position number to an XML file format that does not depend on position numbers.

  • Codes
    Codes identify allowable values, their meanings, and data entry formats for data items. Chapters IX and X specify either the standard codes for each data item or the source for the codes.

    Example for the item “Sex”:
    Codes
    1 Male
    2 Female
    3 Other (intersex, disorders of sexual development/DSD). The word hermaphrodite formerly classified under this code is an outdated term.
    4 Transsexual, NOS
    5 Transsexual, natal male
    6 Transsexual, natal female
    9 Not stated/Unknown


    When it is necessary to collect more specific information than that represented by the standard codes, every effort should be made to ensure that the more specific codes will accurately collapse into the pre-existing codes. This approach permits diversity without compromising inter-registry comparability or meta-analyses.

  • Coding Rules
    Coding rules are the guidelines and interpretations for deciding the correct code for a given tumor and are defined in the documentation of other standard-setting organizations. For each data item, Chapters VIII and X list a "Source of Standard," and the documentation from this source should be consulted for coding rule standards.

    Hypothetical Example: A coding rule might state which code to assign for sex when the medical record states the patient is female and the death certificate states male.