North American Association of
Central Cancer Registries

Standards for Cancer Registries
Volume II

Data Standards and Data Dictionary

Nineteenth Edition
Record Layout Version 15
Implementation: January 1, 2015


Edited By
Monica Thornton


October 2014
Revised October 2014
Revised February 2015

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 15, 19th ed. Springfield, Ill.: North American Association of Central Cancer Registries, October 2014, revised October 2014, revised February 2015.

Acknowledgment

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

This project has been funded in part with Federal funds from the National Cancer Institute, National Institutes of Health and Department of Health & Human Services under Contracts No. HHSN261201400004I / HHSN26100001. Production and distribution of this Volume were provided in part by Cooperative Agreement Number 5U58DP004917from the Centers for Disease Control and Prevention. 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 October 2014.

NAACCR BOARD OF DIRECTORS
2014-2015

President:
Jill MacKinnon, PhD

Florida Cancer Data System
University of Miami Miller School of Medicine
Sylvester Comprehensive Cancer Center
Telephone: (305) 243-3426
Email: jill_mackinnon@miami.edu

President-Elect:
Charles Wiggins, PhD

New Mexico Tumor Registry
Telephone: (505) 272-8594
Email: cwiggins@salud.unm.edu


Treasurer:
Susan T. Gershman, MS, MPH, PhD, CTR
 
Massachusetts Cancer Registry
Department of Public Health
Phone: (617) 624-5646
Email: susan.gershman@state.ma.us

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

Members at Large:
Eric Durbin, DrPH, MS

Kentucky Cancer Registry
Telephone: (859) 219-0773 ext. 223
Email: ericd@kcr.uky.edu

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

Maureen MacIntyre, MHSA

Surveillance and Epidemiology Unit
Cancer Care Nova Scotia
Telephone: (902) 473-6084
Email: maureen.macintyre@ccns.nshealth.ca

Winny Roshala, BA, CTR

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

Antoinette Stroup, PhD 
New Jersey State Cancer Registry
Telephone: (732) 633-0500
Email: antoinette.stoup@doh.state.nj.us

Kim Vriends, BHA, CHIM
Prince Edward Island Cancer Registry
Phone: (902) 894-2167
Email: kavriends@gov.pe.ca



 

UNIFORM DATA STANDARDS WORK GROUP
2014-2015

Patricia Andrews, MPH, CTR*
Co-Chair
Louisiana Tumor Registry
Telephone: (504) 568-5795
Email: pandre@lsuhsc.edu

Lori Koch, CTR*
Co-Chair
Illinois State Cancer Registry
Telephone: (217) 557-5152
Email: Lori.Koch@illinois.gov

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

Susan Capron*
Telephone: (773) 278-6207
Email: scapron@mindspring.com

Greg Christ*
Canadian Cancer Registry
Health Statistics Division
Statistics Canada
Telephone: (613) 951-0544
Email: gregory.christ@statcan.gc.ca

Dan Curran
C/NET Solutions
Telephone: (916) 779-0362
Email: danc@askcnet.org

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

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

Alan Houser*
C/NET Solutions
Telephone: (510) 524-1239
Email: alanh@askcnet.org

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



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


Sara Manson, CTR
*
Centers for Disease Control and Prevention
Telephone: (770) 488-4635
Email: smanson@cdc.gov

Ryan McCabe, PhD
Commission On Cancer
Telephone: (312) 202-3211
rmccabe@facs.org

Cheryl Moody, CTR
*
California Cancer Registry
Telephone: (916) 731-2540
Email: cmoody@ccr.ca.gov

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.parrish@illinois.gov

Steven Peace, CTR
Florida Cancer Data System
Telephone: (305) 243-4600
Email: speace@med.miami.edu

Jerri Linn Phillips*
Commission On Cancer
Telephone: (312) 202-5514
Email: jphillips@facs.org

Lynn Ries, MS

National Cancer Institute
SEER Program, SRP, DCCPS
Telephone: (240) 276-6863
Email: rieslynn@mail.nih.gov

Nancy Rold
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

Susanne Schwartz*

New Jersey State Cancer Registry
Telephone: (609) 588-3500 ext. 2593
Email: suzanne.schwartz@doh.state.nj.us

Heather
Stuart-Panko , MS*
Saskatchewan Cancer Agency
Telephone: (306) 359-5883
Email: heather.stuart@saskcancer.ca

*Voting Member

 

VOLUME II TASK FORCE


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

Patricia Andrews, MPH, CTR

Louisiana Tumor Registry
Telephone: (504) 568-5795
Email: pandre@lsuhsc.edu

Sandra Gamber
Elekta
Telephone: (408) 678-2469
Email: Sandra.Gamber@elekta.com

Amy Kahn, MS, CTR
New York State Cancer Registry
Telephone: (518) 393-7184
Email: amy.kahn@health.ny.gov

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

David O'Brien, PhD

Alaska Cancer Registry
Telephone: (907) 269-8047
Email: david.obrien@alaska.gov

Jerri Linn Phillips, MA, CTR

American College of Surgeons
National Cancer Data Base
Telephone: (312) 202-5514
Email: jphillips@facs.org

 

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 K53
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
FedEx, UPS, and 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)
2121 West White Oaks Drive, Suite B
Springfield, IL 62704-7412
Telephone: (217) 698-0800
Fax: (217) 698-0188
Email: info@naaccr.org
Website: www.naaccr.org

 

PREFACE TO THE NINETEENTH EDITION

NAACCR continues with its strong commitment to maintain standardization of cancer registry data. The collaboration and cooperation of our sponsoring members is vital for achieving consensus on how each data variable will be coded. 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 15 includes the addition of seven new survival data items which are designed to facilitate a common approach to survival analysis by NAACCR registries. Changes were made to two fields: 1) Sex [220]: updated code 4, Transsexual, NOS, added code 5, Transsexual, natal male and code 6, Transsexual, natal female; and 2) RX Date Other Flag [1251]: code 15, Other Therapy is planned as part of the first course of therapy, but had not been started at the time of the most recent follow-up.

I would like to thank Patricia Andrews and Jeannette Jackson-Thompson, 2013-2014 Co-chairs of the Uniform Data Standards Work Group, for their leadership and dedication. I would also like to thank the Volume II Task Force for their knowledge and time to ensure timely release of this publication. 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, Inc.

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, 2015.

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.
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: