North American Association of
Central Cancer Registries

Standards for Cancer Registries
Volume II

Data Standards and Data Dictionary

Eighteenth Edition
Record Layout Version 14
Implementation: January 1, 2014


Edited By
Monica Thornton


September 2013
Revised November 20
13

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 14, 18th ed. Springfield, Ill.: North American Association of Central Cancer Registries, September 2013, revised November 2013.

Acknowledgment

We are very grateful to the members of NAACCR's Uniform Data Standards Committee-Volume II Subcommittee 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. HHSN261200900015C and ADB No. N02PC-2009-00015. Production and distribution of this Volume were provided in part by Cooperative Agreement Number 5U58DP001803 from 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 CDC. The NAACCR Board of Directors adopted these standards in September 2013.

NAACCR BOARD OF DIRECTORS
2013-2014

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

Past President:
Maureen MacIntyre, MHSA

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

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:
Les Mery

Public Health Agency of Canada
Telephone: (613) 957-8926
Email: les.mery@phac-aspc.gc.ca

Members at Large:
Eric Durbin, DrPH, MS

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

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

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


 

UNIFORM DATA STANDARDS COMMITTEE
2013-2014

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

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

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

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

Roxanne Carroll*
National Cancer Registrars Association
Telephone: (410) 871-6545
Email: rn.carroll@hotmail.com

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

Castine Clerkin, MS*
Centers for Disease Control
and Prevention
Telephone (770) 488-3095
Email: hhe2@cdc.gov


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

Theresa Hinman
New York State Cancer Registry
Telephone: (518) 474-2255
Email: tmh01@health.ny.gov

Suzanne Hornbeck, MS, CTR
Telephone: (732) 657-7395
Email: suzanneesi@yahoo.com

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

Missy Jamison
National Cancer Institute
Telephone: (240) 276-6887
Email: missy.jamison@nih.gov

Amy Kahn, MS, CTR*
New York State Cancer Registry
Telephone: (518) 474-2255
Email: ark02@health.ny.gov

Gary Levin
Florida Cancer Data System
Telephone: (305) 243-4073
Email: glevin@med.miami.edu

Gema Midence
Florida Cancer Data System
Telephone: (305) 243-2642
Email: gmidence@med.miami.edu

Pamela Moats
National Cancer Registrars Association
Telephone: (304) 265-1620
Email: psmoats@gmail.com



Cheryl Moody
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

Jennifer Ruhl
National Cancer Institute
Telephone: (240) 276-6808
Email: ruhlj@mail.nih.gov

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 WORK GROUP
2013-2014

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

Hollie Anderson
Canadian Cancer Registry
Telephone: (613) 951-0757
Email: hollie.anderson@statcan.gc.ca

Patricia Andrews, MPH, CTR

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




Bec Francis, M.Ed., CTR
Missouri Cancer Registry
Missouri Department of Health
Telephone: (573) 884-2027
Email: FrancisR@health.missouri.edu

Amy Kahn, MS, CTR
New York State Cancer Registry
Telephone: (518) 474-2255
Email: ark02@health.ny.gov

David O'Brien, PhD, GISP
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: www.facs.org/cancer/

National Cancer Institute SEER Program
Cancer Surveillance Research Program
Division of Cancer Control and Population Sciences
6116 Executive Blvd. - MSC 8316 Suite 504
Bethesda, MD 20892-8316
Telephone: (301) 496-8510
Fax: (301) 496-9949
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 EIGHTEENTH EDITION

NAACCR continues with 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 item 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 14 includes several changes to existing data items. Some of the changes in this version include: revising the standard setters' requirements in Chapter VIII; adding ‘blank’ as an allowable value for Place of Death Country [1944] and Place of Death State [1942]; updating the Rationale in the NPI fields; and, adding a Note to the Chemo and BRM fields regarding the change in classification for some targeted therapies, such as Herceptin.

I would like to thank Jeannette Jackson-Thompson, Chair of the Uniform Data Standards Committee, for her leadership and dedication. I would also like to thank the Volume II Work Group for volunteering their knowledge and time to ensure timely release of this publication. A special acknowledgement goes to Monica Thornton for her attentive and hardworking 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. 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, 2014.

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 Chapter 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: