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North American Association of
Central Cancer Registries

Standards for Cancer Registries
Volume II

Data Standards and Data Dictionary

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 Standardization and Registry Development Steering Committee.

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

• Volume I, Data Exchange Standards: XML Specifications for Cancer Registry Records
  Intended for programmers and selected users of central cancer registry data, this Volume defines the XML data exchange standard for creating, transmitting, and consuming cancer registry records. It provides guidelines for converting XML cancer registry records into a delimited format for ease of use in statistical software, guidelines for validating XML files, and how to take advantage of the extensibility in an XML cancer registry record.
• Volume III, Standards for Completeness, Quality, Analysis, Management, Security and Confidentiality of Data
  Intended for central registries, this provides detailed standards for many aspects of the operation of a population-based cancer registry.
• Volume IV, Standard Data Edits
  This volume is made available electronically as an electronic edits metafile with supporting documentation on the standard computerized edits for data corresponding to the data standards Volume II.
• Volume V, Pathology Laboratory Electronic Reporting
  Recommends message or format standards for electronic transmission of reports (pathology, cytology and hematology) from pathology laboratories to central cancer registries.

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

Suggested citation

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.

NAACCR BOARD OF DIRECTORS
2020-2021

Jeannette Jackson-Thompson, MSPH, PhD
Co-Chair
Missouri Cancer Registry and Research Center
Telephone: (573) 882-7775
Email: [email protected]

 

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:

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, revised Sept 2020, Oct. 2020, Nov. 2020, May 2021.
  
• 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:

• Hofferkamp J (ed). Standards for Cancer Registries Volume III: Standards for Completeness, Quality, Analysis, Management, Security and Confidentiality of Data. Springfield, Ill.: North American Association of Central Cancer Registries, August 2008.
• Havener LA (ed). Standards for Cancer Registries Volume III: Standards for Completeness, Quality, Analysis, and Management of Data. Springfield, Ill.: North American Association of Central Cancer Registries, October 2004.
• North American Association of Central Cancer Registries. Standards for Completeness, Quality, Analysis, and Management of Data. Springfield, Ill.: North American Association of Central Cancer Registries, September 2000.
• Seiffert J (ed). Standards for Cancer Registries Volume III: Standards for Completeness, Quality, Analysis, and Management of Data. Sacramento, Cal.: American Association of Central Cancer Registries, February 14, 1994.

NAACCR Standards Volume IV:

• Seiffert J, Capron S, and Tebbel J, (eds). Standards for Cancer Registries Volume IV: Standard Data Edits. Sacramento, Cal.: North American Association of Central Cancer Registries; April 4, 1996.

NAACCR Standards Volume V:

GOAL OF THIS DOCUMENT

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

• Provide a comprehensive reference to ensure uniform data collection
• Reduce the need for redundant coding and data recording between agencies
• Facilitate the collection of comparable data among groups
• Provide a resource document to help registries that are establishing or revising their databases

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.

• 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.

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.

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.