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North American Association of
Central Cancer Registries

Standards for Cancer Registries
Volume II

Data Standards and Data Dictionary

Twenty First Edition
Record Layout Version 18
Implementation: January 1, 2018


Edited By
Monica Thornton


February 2018
(Revised March 2018, April 2018, May 2018, June 2018, Aug. 2018, Sept. 2018, Oct. 2018)


Sponsoring Organizations

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

Sponsors with Distinction

American Cancer Society
American College of Surgeons
American Joint Committee on Cancer

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: http://www.naaccr.org/.

Suggested citation

Thornton ML, (ed). Standards for Cancer Registries Volume II: Data Standards and Data Dictionary, Record Layout Version 18, 21st ed. Springfield, Ill.: North American Association of Central Cancer Registries, February 2018, (Revised Mar. 2018, Apr. 2018, May 2018, Jun. 2018, Aug. 2018, Sept. 2018, Oct. 2018).

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 5NU58DP004917. 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 February 2018.

NAACCR BOARD OF DIRECTORS
2017-2018


President
:
Dr. Antoinette Stroup

New Jersey State Cancer Registry
Telephone: (732) 235-7422
Email: nan.stroup@rutgers.edu

Past-President:
Dr. Charles Wiggins

New Mexico Tumor Registry
Telephone: (505) 272-3127
Email: cwiggins@salud.unm.edu

Treasurer:
Maria J. Schymura

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 Registrar's Association
Telephone: (703) 299-6640 ext. 313
Email: lswain@ncra-usa.org

 

Representatives-at-Large:
Francis P. Boscoe, PhD
New York State Cancer Registry
Telephone: (518) 474-2255
Email: fpb01@health.state.ny.us

Isaac Hands

Kentucky Cancer Registry
Telephone: (859) 219-0773 ext. 268
Email: isaac@kcr.uky.edu

Christopher Johnson, MPH

Cancer Data Registry of Idaho
Telephone: (208) 489-1380
Email: cjohnson@teamiha.org

Deirdre Rogers, MS, CTR
Mississippi Cancer Registry
Telephone: (601) 815-5479
Email: dbrogers@umc.edu

Randy K. Rycroft

Colorado Central Cancer Registry
Telephone: (303) 692-2542
Email: randi.rycroft@state.co.us

Heather Stuart-Panko, CHIM

Saskatchewan Cancer Agency
Telephone: (639) 625-2042
Email: Heather.stuart-panko@saskcancer.ca

UNIFORM DATA STANDARDS WORK GROUP
2017-2018

Jeannette Jackson-Thompson, MSPH, PhD
Co-Chair

Missouri Cancer Registry and Research Center
Telephone: (573) 882-7775
Email: Jacksonthompsonj@health.missouri.edu

Suzanne Schwartz
Co-Chair

New Jersey State Cancer Registry
Telephone: (609) 663-0500, ext. 0561
Email: suzanne.schwartz@doh.nj.gov

Lori Havener, CTR
NAACCR, Inc.
Telephone: (217) 698-0800 ext. 3
Email: lhavener@naaccr.org

Jim Hofferkamp
NAACCR, Inc.
Telephone; (217) 698-0800 ext. 5
Email: jhofferkamp@naaccr.org

Monica Thornton
NAACCR, Inc.
Telephone; (217) 698-0800 ext. 1
Email: mthornton@naaccr.org

Nicole Aagaard, MPH

Rocky Mountain Cancer Data Systems
Telephone; (801) 581-4307
Email: nicole.aagaard@utah.edu

Peggy Adamo
National Cancer Institute
Telephone: (240) 276-6867
Email: adamom@mail.nih.gov

Sally Bushhouse, DVM, PhD
Minnesota Cancer Surveillance System
Minnesota Department of Health
Telephone: (651) 201-5926
Email: sally.bushhouse@state.mn.us

Angela Costantini, BA, CTR
Telephone: (513) 870-7855
Email: aicostantini@mercy.com

Dan Curran
C/NET Solutions
Telephone: (916) 770-2312
Email: danc@askcnet.org

Lynda Douglas
Centers for Disease Control and Prevention
Telephone: (770) 488-1075
Email: het9@cdc.gov

Michelle Esterly, RHIA, CTR
Telephone: (610) 693-8425
Email: mesterly@cdc.gov

Sandra Gamber
ELEKTA Impac Software
Telephone: (408) 678-2469
Email: sandra.gamber@elekta.com

Donna Hansen
California Cancer Registry
Telephone: (916) 731-2500
Email: donna.hansen@ucdmc.ucdavis.edu

Megsys C. Herna, CTR
Florida Cancer Data System
University of Miami School of Medicine
Telephone: (305) 243-2625
Email: MHerna@med.miami.edu

Theresa Juster
New York State Cancer Registry
Telephone: (518) 474-2255
Email: theresa.juster@health.ny.gov

 

Amy Kahn, MS, CTR
New York State Cancer Registry
Telephone: (518) 474-2255
Email: amy.kahn@health.ny.gov

Mary Jane King
Ontario Cancer Registry
Telephone: (416) 217-1242
Email: maryjane.king@cancercare.on.ca

Lori Koch
Illinois State Cancer Registry
Telephone: (217) 557-4090
Email: Lori.Koch@illinois.gov

Gemma Lee
Ontario Cancer Registry
Cancer Care Ontario
Telephone: (416) 971-9800
Email: gemma.lee@cancercare.on.ca

Mary Lewis, CTR
Centers for Disease Control and Prevention
Telephone: (770) 488-4783
Email: bkf5@cdc.gov

Cheryl Moody
California Cancer Registry
Telephone: (916) 731-2540
Email: cheryl.moody@ucdmc.ucdavis.edu

Linda Mulvihill, CTR
National Cancer Registrar's Association
Telephone: (703) 299-6640, ext. 313
Email: epe9.lgm@gmail.com

David O'Brien, PhD, GISP
Alaska Cancer Registry
Telephone: (907) 269-8047
Email: david.obrien@alaska.gov

Pam Parrish
Illinois State Cancer Registry
Telephone: (217) 785-1873
Email: pam.parish@illinois.gov

Steven Peace, CTR
Florida Cancer Data System
University of Miami School of Medicine
Telephone: (305) 243-4600
Email: speace@miami.edu

Lynn Ries
National Cancer Institute
Telephone: (301) 984-0419
Email: rieslynn@mail.nih.gov

Nancy Rold, BA, CTR
Missouri Cancer Registry and Research Center
Telephone: (573) 882-7775
Email: roldn@missouri.edu

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

Kathleen Thoburn, CTR
Commission on Cancer
Telephone: (312) 202-5290
Email: kthoburn@facs.org

Joanne Turner
Nova Scotia Surveillance and Epidemiology Unit
Telephone: (902) 473-3478
Email: joanne.turner@ccns.nshealth.ca

 

 

 

 

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 FIRST 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, Volume II, Data Standards and Data Dictionary, Version 18 includes over 200 new data items, revisions to existing data items, and a new record layout. Many of the new data items are site-specific data items that are either required for AJCC 8th Edition staging or required by one of the standard setting agencies. There are several new radiation treatment data items; AJCC T, N, and M data items; EOD data items; and other new data items for Rural Urban Commuting Area (RUCA) and the Urban Rural Indicator Code (URIC), Geographic Location IDs, County at DX, etc. All of the new data items will be designated as new in the various chapters of Standards Volume II. The CS PreRX and PostRX data items are retired in Version 18. Data item names have been expanded from 25 charters to 50 characters.

Thank you to the many NAACCR members and standard setters that devoted countless hours to create the new site-specific factors and modify existing site-specific factors.

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 knowledge and volunteering many hours of their time to review of all the new data items, revised data items, and record layout. A special acknowledgement goes to Monica Thornton for her attentive 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 Standards Volume I:

NAACCR Standards Volume II:

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, 2018.

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) also will 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. Sidebars and highlighting in Chapter X also indicate 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:

Range Use
00001 - 04999 Data items in new case layouts, record types I, C, A, or M.
05000 - 06999 Data items in Analysis/Research record only. (These data items are not within the purview of NAACCR, and NAACCR will not use the data item numbers in this range.)
07000 - 08999 Pathology Laboratory record.
09000 - 09099 Data items in Update/Correction record only.
09100 - 09499 Future use.
09500 - 09999 Data items for Local use.
10000 - 10499
System variables for Local use.
12000 - 12999
For NPCR use.
13000 - 13999
For SEER use.
14000 - 14999
For CoC use.
20000 - 20999 Data items for International use. (These data items are not within the purview of NAACCR, and NAACCR will not use the data item numbers in this range.)
99000 - 99999 Data items for Patient Care Evaluation studies. These may be assigned by CoC or others. A large range is allotted because many new items may be assigned each year for individual studies.

Refer to NAACCR Standards Volume I1 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:

  • Record Layout/Data Exchange
    Record layout/data exchange identifies the positions of the data items in a standard flat file data exchange record. These positions are indicated in Chapter VII. See Volume I1 in this series for more extensive information on the data exchange and other NAACCR standard layouts.

    Example: “Sex” is in character position 222 in the NAACCR Data Exchange Record Layout Version 18.
  • 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.
  • Telephone: (703) 299-6640, ext. 313
    Email: epe9.lgm@gmail.com

    David O'Brien, PhD, GISP
    Alaska Cancer Registry
    Telephone: (907) 269-8047
    Email: david.obrien@alaska.gov

    Pam Parrish

    Illinois State Cancer Registry
    Telephone: (217) 785-1873

    Email:
    pam.parish@illinois.gov


    Steven Peace, CTR

    Florida Cancer Data System

    University of Miami School of Medicine

    Telephone: (305) 243-4600

    Email:
    speace@miami.edu


    Lynn Ries

    National Cancer Institute

    Telephone: (301) 984-0419

    Email: rieslynn@mail.nih.gov

    Nancy Rold, BA, CTR

    Missouri Cancer Registry and Research Center
    Telephone: (573) 882-7775
    Email: roldn@missouri.edu

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

    Kathleen Thoburn, CTR
    Commission on Cancer
    Telephone: (312) 202-5290
    Email:
    kthoburn@facs.org


    Joanne Turner

    Nova Scotia Surveillance and Epidemiology Unit

    Telephone: (902) 473-3478

    Email:
    joanne.turner@ccns.nshealth.ca



     

     

     

    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 FIRST 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, Volume II, Data Standards and Data Dictionary, Version 18 includes over 200 new data items, revisions to existing data items, and a new record layout. Many of the new data items are site-specific data items that are either required for AJCC 8th Edition staging or required by one of the standard setting agencies. There are several new radiation treatment data items; AJCC T, N, and M data items; EOD data items; and other new data items for Rural Urban Commuting Area (RUCA) and the Urban Rural Indicator Code (URIC), Geographic Location IDs, County at DX, etc. All of the new data items will be designated as new in the various chapters of Standards Volume II. The CS PreRX and PostRX data items are retired in Version 18. Data item names have been expanded from 25 charters to 50 characters.

    Thank you to the many NAACCR members and standard setters that devoted countless hours to create the new site-specific factors and modify existing site-specific factors.

    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 knowledge and volunteering many hours of their time to review of all the new data items, revised data items, and record layout. A special acknowledgement goes to Monica Thornton for her attentive 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 Standards Volume I:

    • 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.
    • 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:

    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, 2018.

    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) also will 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. Sidebars and highlighting in Chapter X also indicate 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:

    Range Use
    00001 - 04999 Data items in new case layouts, record types A, C, I, M or V.
    05000 - 06999 Data items in Analysis/Research record only. (These data items are not within the purview of NAACCR, and NAACCR will not use the data item numbers in this range.)
    07000 - 08999 Pathology Laboratory record.
    09000 - 09099 Data items in Update/Correction record only.
    09100 - 09499 Future use.
    09500 - 09999 Data items for Local use.
    10000 - 10499
    System variables for Local use. 
    12000 - 12999
    For NPCR use.
    13000 - 13999
    For SEER use.
    14000 - 14999
    For CoC use.
    20000 - 20999 Data items for International use. (These data items are not within the purview of NAACCR, and NAACCR will not use the data item numbers in this range.)
    99000 - 99999 Data items for Patient Care Evaluation studies. These may be assigned by CoC or others. A large range is allotted because many new items may be assigned each year for individual studies.

    Refer to NAACCR Standards Volume I1 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: