Version: Click here to use the Query Builder for Version 18.

Item Search:

CHAPTER II:

HISTORICAL BACKGROUND AND STATUS OF NORTH
AMERICAN STANDARDS

STANDARD-SETTING ORGANIZATIONS AND OTHER STANDARDS DOCUMENTS

Several organizations have played a major role in the development of cancer registry standards. They are listed in alphabetical order.

American Cancer Society

ACS historically has supported the development of standardized cancer classification systems, publishing the first code manual for the morphology of neoplasms in 1951. ACS has long supported the standard-setting programs of ACoS, including the Fundamental Tumor Registry Operations Education Program, the Registry Operations and Data Standards, and the American Joint Committee on Cancer (AJCC).

American College of Surgeons

Since the 1950s, ACoS has taken a leading role in establishing standards for hospital-based cancer programs and the cancer registries that are a part of such programs. Through its Accreditation Program, CoC implements its requirements for case management, registry operation and case inclusion, and data set specifications as published in:

  • Cancer Program Standards,27 which presents standards for the full range of cancer program activities, including the registry.
  • Standards for Oncology Registry Entry (STORE):2 which specifies standards for cases to be included in the registry, data items to be collected, and the codes and coding rules for those items.

CoC requires accredited cancer programs to use the codes and coding instructions published by CoC.

Through NCDB, CoC provides data quality feedback to accredited cancer programs, software providers, and the general cancer registry community. Hospitals in the Accreditation Program are required to submit non-confidential registry data to NCDB, and CoC monitors the quality of data submissions in accordance with existing published standards for accredited programs.

STORE, the Cancer Program Standards, and the NCDB Call for Data announcements, instructions, and technical specifications are available to download at no charge at https://www.facs.org/quality-programs/cancer/ncdb/registrymanuals/cocmanuals/fordsmanual. CoC maintains an interactive CAnswer Forum Database to answer questions about all cancer-related requirements at the same site.

American Joint Committee on Cancer

AJCC formulates and publishes systems of tumor classification by anatomic site and histology through use of the Tumor, Node, Metastasis (TNM) staging system. The TNM staging system is the U.S. standard used by the medical profession to select the most effective treatments and determine prognosis to facilitate the management of cancer care. AJCC is dedicated to the ideal that all cancer cases should be staged, and it publishes the Cancer Staging Manual,7 now in its Seventh Edition as well as the Collaborative Stage Data Collection System,13 now in its Second Edition.

Canadian Council of Cancer Registries

The Canadian Council of Cancer Registries (CCCR) is the standard setting organization in Canada, originally established in 1978. The CCCR provides leadership and support to the provinces and territories that collect information on cancer incidence in Canada. Voting membership of the Council consists of a senior official from each provincial/territorial cancer registry and Statistics Canada. Non-voting members include a representative from the Public Health Agency of Canada and the Canadian Partnership Against Cancer, the Canadian Cancer Society (CCS), the Chair of the Data Quality Management Committee (DQMC) and the Chair of the Data Use and Publication Committee as well as a hospital based registry. Secretarial support is offered through Statistics Canada.

The primary objectives of the Council are to provide direction for data collection and use, provide leadership and support for standard setting and quality management of data, to ensure there is consistency with the standards and practices as outlined by the North American Association of Central Cancer Registries and the International Association of Cancer Registries, to facilitate liaison and communication with partners, to facilitate access to data for surveillance and research as well as to promote the use and dissemination of Cancer Control information.

The Canadian Cancer data set is housed in the Canadian Cancer Registry (CCR) that is maintained by Statistics Canada. The main objective of the CCR is to provide a nationally standardized and comparable database to study cancer patterns and trends, such as cancer incidence and survival. The CCR evolved from the event-oriented (1969) National Cancer Incidence Reporting System (NCIRS) and begins with patient-oriented cases diagnosed in 1992. Data are collected and reported by the Provincial and Territorial Cancer Registries (PTCRs) through annual calls for data. The CCR includes mechanisms for updating and clearing death records and identification of duplicates reported across PTCRs.

National Cancer Registrars Association

An organization of cancer data professionals founded as the National Tumor Registrars Association in 1974, the National Cancer Registrars Association (NCRA) has been instrumental in the training and certification of cancer registrars. NCRA has produced a variety of educational materials, including guidelines for a college curriculum in cancer registry management, a planning manual for registry staffing, training materials for staging of cancer, and a publication on using cancer data to promote the services of the cancer registry. Their publications also include a college-level cancer registry methods textbook (Cancer Registry Management: Principles and Practices for Hospitals and Central Registries, Third Edition, 2011).37

Since 1983, NCRA has promoted the certification of cancer registrars through a semi-annual examination. More than 4,000 Certified Tumor Registrars (CTRs) have successfully completed the exam, which evaluates technical knowledge of methods of cancer data collection, management, and quality control, as well as International Classification of Diseases for Oncology (ICD-O) topography and morphology coding and AJCC, Collaborative Staging and Surveillance, Epidemiology and End Results (SEER) Program staging systems. To maintain their credentials, CTRs are required to complete 20 hours of continuing education every 2 years, which can be obtained by participating in conferences and teleconferences that NCRA has precertified, and by obtaining a passing score on quizzes in NCRA's Journal of Registry Management.

Membership in NCRA is open to anyone interested in cancer data collection. For further information, contact NCRA on the Web at: http://www.ncra-usa.org.

National Coordinating Council for Cancer Surveillance

Founded in 1995, the National Coordinating Council for Cancer Surveillance (NCCCS) meets semi-annually to coordinate surveillance activities within the United States through communication and collaboration among major national cancer organizations, ensuring that the needs of cancer patients and the communities in which they live are fully served; that scarce resources are maximally used; and that the burden of cancer in the United States is adequately measured and ultimately reduced. NCCCS includes representatives from the Armed Forces Institute of Pathology, ACoS, ACS, AJCC, CDC-NPCR, CDC-NCHS, NCI-SEER, NCI-Applied Research Program, NCRA, and NAACCR. Current priorities for NCCCS include building coordination among cancer incidence surveillance and other cancer surveillance systems; electronic medical records and real-time reporting; improving source information to measure disparity (race, ethnicity, socioeconomic status); non-hospital reporting; and defining a decision process for incidence surveillance expansion, both in the addition of data elements and modification of surveillance systems.

National Program of Cancer Registries

CDC has worked to improve registry data nationwide since 1992, when Congress authorized the establishment of the National Program of Cancer Registries (NPCR) through the Cancer Registries Amendment Act (Public Law 102-515).33 CDC provides funds to 45 states, the District of Columbia, Puerto Rico, and the Pacific Island Jurisdictions to assist in planning or enhancing cancer registries, developing model legislation and regulations for programs to increase the viability of registry operations, setting standards for data, providing training for registry personnel, and helping establish computerized reporting and data processing systems.

CDC has contributed substantially to the development of data standards through its financial support of NAACCR, as well as by funding and developing EDITS, a software system that facilitates the coordination of data standards (see Chapter IV). In administering NPCR, CDC requires participating central registries to collect data items that conform to NAACCR standards. NPCR staff also continues to maintain Registry PlusTM, a suite of publicly accessible free software programs made available by CDC to facilitate the implementation of NPCR.

To maximize the benefits of state-based cancer registries, CDC uses the NPCR-Cancer Surveillance System (CSS) for receiving, assessing, enhancing, aggregating, and disseminating data from NPCR-funded registries. This system of cancer surveillance provides valuable feedback to improve the quality and usefulness of registry data and monitor the impact of cancer prevention and control programs. Since 2002 the CDC has published United States Cancer Statistics (USCS) in collaboration with NCI and with contributions from NAACCR. This report contains incidence data from states, the District of Columbia, and metropolitan areas meeting national standards for data quality, completeness, and timeliness. In total, the cancer registries whose data are included in the most recent report cover nearly 100% of the U.S. population. For additional information on NPCR, visit the CDC/NPCR website at: http://www.cdc.gov/cancer/npcr/.

North American Association of Central Cancer Registries

The American Association of Central Cancer Registries (AACCR) was established in 1987, and with the addition in 1995 of Canadian registries as members, the name was changed to the North American Association of Central Cancer Registries (NAACCR). Members are population-based cancer registries in the United States and Canada, national cancer and vital statistics organizations in both countries, and other organizations and individuals interested in cancer registration and surveillance. NAACCR is a professional organization that develops and promotes uniform data standards for cancer registration; provides education and training; certifies population-based registries for high-quality data; evaluates, aggregates, and publishes data from central cancer registries; and promotes the use of cancer surveillance data and systems for cancer control and epidemiologic research, public health programs, and patient care to reduce the burden of cancer in North America. NAACCR welcomes membership from cancer registries and other organizations or individuals that are interested in the collection, analysis, and publication of data on cancer incidence.

Surveillance Epidemiology and End Results Program

NCI's SEER Program has collected standardized data to measure progress in cancer prevention and control for more than 40 years. Established by a Federal mandate--the National Cancer Act of 1971--the SEER Program is a sequel to two earlier NCI programs: the End Results Group (1956-72) and the Third National Cancer Survey (1969-71).

Seven population-based registries have provided data continuously since the SEER Program began in 1973: the States of Connecticut, Iowa, New Mexico, Utah, and Hawaii; and the Metropolitan Areas of Detroit and San Francisco-Oakland. In 1974-75, the regions of Seattle-Puget Sound and Metropolitan Atlanta were added. These areas, plus the rural Georgia region added in 1978, cover about 9.5 percent of the U.S. population, followed in 1980 by the addition of American Indians residing in Arizona. In 1992, the SEER Program added two additional regions in California--Los Angeles and San Jose-Monterey--bringing coverage of the U.S. population to 14 percent. In order to increase coverage of the American Indian/Alaska Native populations, SEER has included data from the Alaska Native Tumor Registry since 1984. These regions were selected for their epidemiologically significant population subgroups and, in fact, over-sample minority populations in the United States. In 2001, four states were added--Kentucky, Louisiana, New Jersey, and the remainder of California--resulting in coverage of about 26 percent of the U.S. population. In 2010, greater Georgia joined the SEER program, completing coverage of the state of Georgia and bringing SEER coverage of the U.S. to 28 percent of the population. NCI shares funding of these five states with the Centers for Disease Control and Prevention.

The purpose of the SEER Program, as stated in the National Cancer Act legislation, is to collect, analyze, and disseminate data useful in the prevention, diagnosis, and treatment of cancer. The goals of the Program are to:

These goals illustrate that the aim of the SEER Program is providing cancer surveillance over time. As a result, changes in standards are carefully considered for their impact both on future data and compatibility with previous data.

Participating registries are required to submit data in a standard format using standardized definitions and codes described in the current edition of the SEER Program Coding and Staging Manual3 and the Collaborative Staging Manual and Coding Instructions.13

Standardized edits, developed by SEER and shared with participating registries, are applied to data submissions, and the results are returned to the participating registries.

SEER Program publications relating to data standards (http://www.seer.cancer.gov) include:

Publications are available electronically and may be downloaded and printed without charge. Some publications are available on CD. To place an order or to obtain further information, go to the SEER Program Website at: http://seer.cancer.gov/publications.

Additional instructional resources are available on the SEER website (http://seer.cancer.gov/registrars/).

World Health Organization

The World Health Organization (WHO), an agency of the United Nations, is responsible for publishing and maintaining the international standard for diagnosis coding systems. Selected publications include:

These publications are world-standard diagnosis coding systems.

ICD-9 was adapted for use in the United States as the Clinical Modification of ICD-9 (ICD-9-CM),15 and is the current standard for coding medical record diagnoses in health information management departments in U.S. health care facilities. ICD-1014 was implemented for coding causes of death on death certificates in the United States effective January 1, 1999.

The Second Edition of ICD-O17 became the standard for coding cancer diagnoses in the United States in 1992. An extensive revision of the morphology codes, especially the Lymphoma and Leukemia Section, was field-tested for the 1999 and 2000 diagnosis years, and the Third Edition of ICD-O16 was implemented for 2001 diagnoses.

WHO published an updated ICD-O-3 in 2013. Refer to the 2014 Guidelines for ICD-O-3 Update Implementation for instructions, http://www.naaccr.org/LinkClick.aspx?fileticket=u7d3sB71t5w%3d&tabid=126&mid=466

WHO publications are sold through the following agency in the United States:

STYLUS PUBLISHING, LLC
22883 Quicksilver Dr.
Herndon, VA 20172-0605
Tel: 1-800-232-0223 / 703-661-1581
Fax: 703-661-1501
Email: StylusMail@PressWarehouse.com
Web site: http://www.Styluspub.com

In the United States, the contact for further information on ICD-O is the Expert on Nomenclature and Coding at SEER (http://seer.cancer.gov).

HISTORICAL BACKGROUND OF STANDARDS COORDINATION

Because the various standard-setting organizations use their data for different purposes, some data elements had different meanings, depending on the organization using the data. A long history of cooperation has been evident among organizations interested in cancer data to resolve the discrepancies between organizations in their interpretation of data elements.

The earliest standard setters were CoC and SEER. The End Results Group, predecessor of SEER, published coding rules and guidelines as early as the 1950s; CoC published its first data collection manual, the Supplement on the Tumor Registry, in conjunction with its Cancer Program Manual 1981. At that time, hospital-based cancer registries often used CoC's recommended codes and coding rules, and SEER central registries used those of the SEER Program. The two systems were not always in agreement. As a result, CoC and SEER began working together in the early 1980s to make the codes and definitions in their manuals consistent.

CoC and SEER attempted to define one common set of data item definitions, field lengths, and codes for use by both SEER registries and hospital-based registries. By 1988, the collaboration resulted in the publication of both CoC's Data Acquisition Manual and the SEER Program Code Manual, with data items and codes in substantial agreement. Having more congruent data sets allowed for easier data sharing and data comparisons, especially with the advent of personal computers that were sufficiently powerful to analyze large amounts of cancer data. This achievement helped set precedents for cooperation in data management, and maintaining congruence whenever possible has continued to be a top priority for these two groups.

During the same period, the California Cancer Registry was developing a statewide automated system that allowed facilities to report electronically to the state registry system. One region in California was a SEER registry at that time, and a large number of hospitals maintained CoC-accredited programs. To facilitate implementation of standards within its program, the California Cancer Registry requested that SEER and CoC establish a formal committee to pursue data standardization and requested membership on this committee.

The function of that committee was transferred to NAACCR's Uniform Data Standards Committee [now the Uniform Data Standards Work Group (UDSWG)] when it was established in 1987. Membership was expanded to include all of the major standard-setting organizations and representation from registry software vendors and central registries. This Work Group has made enormous progress toward standardization. A major success occurred when all of the participating groups agreed to implement the Second Edition of ICD-O simultaneously for tumors diagnosed in 1992 and later. In 1993, NAACCR convened a multidisciplinary conference to address the issue of collecting data on pre-invasive cervical neoplasia, resulting in specific recommendations for member registries to cease collection of cervical carcinoma in situ. UDSWG provides a national forum to discuss data issues and reach consensus on data standards. Given the extensive effort required to maintain uniform standards, in 2000, a subsidiary of Uniform Data Standards Committee, the Volume II Work Group (now the Volume II Task Force), was formed to focus on the annual updates, revisions, and additions to compendiums of national standards.

CDC added another strong voice for standardization. CDC requires that the registries in 45 states, the District of Columbia, Puerto Rico, and the Pacific Island Jurisdictions funded by NPCR use standard data items and codes. CDC is a sponsoring member of NAACCR and has participated in committee activities of NAACCR. Through its contractor, CDC provides quality control activities for participants in NPCR and has facilitated the setting of standards and encouraged their adoption. The EDITS project described in Chapter IV is an example of the innovative approach CDC has supported.

At the time of this revision to Volume II, the major organizations agree in principle that their data standards will be consistent wherever possible. There are, however, areas where agreement has not been reached. These are discussed in detail in Chapter V.

Despite the progress made toward standardization and the near-universal agreement that standardization is desirable, much remains to be done. Implementation of existing standards is not uniform, and implementation of changes in standards is not always synchronized. SEER and CoC will continue to publish separate coding manuals on different update schedules. Standardized data edits must be updated, maintained, and used by all registries.

In Canada, cancer registries at the provincial and territorial level joined together with Statistics Canada, a national agency, to form the Canadian Council of Cancer Registries. This process started in 1986 and led to the development of common national standards for the Canadian Cancer Registry, which were implemented with a reference date of January 1, 1992. A Data Quality Committee, which reports to the Council, is responsible for making recommendations to set national standards, and will review and monitor data quality and resolve any inconsistencies in procedures, coding, or other activities affecting data comparability.

NAACCR hopes that documenting existing standards, recommending standards where they do not yet exist, and publishing the results in a concise and authoritative form will enable registries and software providers to move forward in achieving comparable data that can be more widely used.

Schedule of Revisions to NAACCR Standards Documents

In 2000, the NAACCR Board of Directors established a Standards Implementation Task Force to review the timeline for changes to data standards and to recommend guidelines for a new timeline that would meet the needs of the standard-setting organizations, central cancer registries, vendors, and reporting facilities. The Standards Implementation Task Force developed guidelines for major changes to be implemented on a 3-year cycle, with minor changes published in an update of the current version of Volume II. The Cancer Registration Steering Committee (CRSC) was established in 2005 to provide regular communication among leaders of NAACCR and its sponsoring member organizations to facilitate coordination and promote consensus in the development and implementation of major data items, standards, and procedures related to cancer registration.

In 2011, the CRSC charged the Change Management Work Group with updating the 2003 Implementation Guidelines to meet the needs of the cancer surveillance community. The Change Management Work Group suggested a flexible process where changes are implemented on a two-year cycle, year one for implementation and year two for evaluation. However, external factors such as legislation or policy-setting at the executive level of standard setting organizations may necessitate more frequent change that would not exceed a frequency of one time per year. The WG also recommended the creation of the Change Management Board to manage all aspects of changes impacting hospital and central cancer registries. This process was implemented in 2013.

In 2013, the Uniform Data Standards Work Group decided that the Volume II version would concur with the year of implementation starting in 2014. For example, Volume II, Version 14 was implemented January 2014.

All NAACCR members are encouraged to present suggestions or comments on proposed changes to the standards to the Uniform Data Standards Work Group with simultaneous notification to CRSC. The NAACCR website, http://www.naaccr.org, provides the name of the Work Group Co-Chairs and forms for proposing additions or revisions.

Table 1. Record Layout Table With References.

NAACCR Release Date Effective Date* Reference Manuals Accommodated NAACCR Metafile Version
Version 18

2/2018 Multiple revision dates

 

1/1/2018CoC STORE, 2018
SEER Program Coding and Staging Manual, 2018
SEER Summary Staging Manual, 2018
AJCC Staging Manual, Seventh Edition, 2010
EOD,
2018
WHO ICD-O-3, 2013
Metafile Version 18
Version 16   
09/20151/1/2016CoC FORDS Revised for 2015
SEER Program Coding and Staging Manual, 2016
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**

Metafile Version 16
Version 15    
09/20141/1/2015
CoC FORDS Revised for 2015
SEER Program Coding and Staging Manual, 2015
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**
Metafile Version 15
Version 14   
09/2013 1/1/2014 CoC FORDS Revised for 2013
SEER Program Coding and Staging Manual, 2014
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**
Metafile Version 14
Version 13      
06/2012 1/1/2013 CoC FORDS Revised for 2013
SEER Program Coding and Staging Manual, 2012, with 2013 Changes
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**
Metafile Version 13
Version 12.2 06/2011 1/1/2012 CoC FORDS Revised for 2012
SEER Program Coding and Staging Manual, 2012
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**
Metafile Version 12.2
Version 12.1 06/2010
Revised
12/2010
1/1/2011 CoC FORDS Revised for 2011
SEER Program Coding and Staging Manual
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010 Collaborative Stage Data Collection System**
Metafile Version 12.1
Version 12
Revised
08/2009
02/2009 1/1/2010 CoC FORDS Revised for 2010
SEER Program Coding and Staging Manual
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Seventh Edition, 2010
Collaborative Stage Data Collection System**
Metafile Version 12
Version 11.3 4/1/2008 1/1/2009 CoC FORDS Revised for 2007
SEER Program Coding and Staging
Manual 2007, Revision 1
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Sixth Edition, 2002
Collaborative Staging Manual and Coding Instructions**
Metafile Version 11.3
Version 11.2 4/1/2007 1/1/2008 Same as Version 11.1 Metafile Version 11.2
Version 11.1 4/1/2006 1/1/2007 CoC FORDS Revised for 2007
SEER Program Coding and Staging Manual 2007 
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Sixth Edition, 2002
Collaborative Staging Manual and Coding Instructions**
Metafile Version 11.1
Version 11 10/1/2004 1/1/2006 CoC FORDS: Revised for 2004
SEER Program Code Manual
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Sixth Edition, 2002
Collaborative Staging Manual and Coding Instructions**
Metafile Version 11
Version 10.2 3/1/2004 1/1/2005 Same as Version 10.1 Metafile Version 10
Version 10.1 3/1/2003 1/1/2004 CoC FORDS: Revised for 2004
SEER Program Coding and Staging Manual 2004
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Sixth Edition, 2002
Collaborative Staging Manual and Coding Instructions (implementation 01/01/2004)
Metafile Version 10
Version 10 3/20/2002 1/1/2003 CoC FORDS (2003)
SEER Program Code Manual
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Sixth Edition, 2002
Metafile Version 10
Version 9.1 3/21/2001 1/1/2002 Same as Version 9 Metafile Version 9
Version 9 5/15/2000 1/1/2001 CoC/ROADS, 1996, Rev. 1998
SEER Program Code Manual, 1998
WHO ICD-O-3, 2000
SEER Summary Staging Manual, 2000
AJCC Staging Manual, Fifth Edition, 1997
SEER Extent of Disease Manual, 1998
Metafile Version 9
Version 8 3/30/1999 1/1/2000 Same as Versions 6 and 7 Metafile Version 8
Version 7 4/13/1998 1/1/1999 Same as Version 6 Metafile Version 7
Version 6 1/23/1998
Revised
3/20/1998
1/1/1998 CoC/ROADS, 1996, Rev. 1998
WHO ICD-O-2, 1990
SEER Summary Staging Guide, 1977
AJCC Staging Manual, Fifth Edition, 1997
SEER Extent of Disease Manual, 1998
Metafile Version 6
Version 5.1 3/12/1997 1/1/1997 Same as Version 5 Metafile Version 5
Version 5 4/10/1996 1/1/1996 CoC/ROADS, 1996
SEER Program Code Manual, 1992
WHO ICD-O-2, 1990
SEER Summary Staging Guide, 1977
AJCC Staging Manual, Fourth Edition, 1992
SEER Extent of Disease Manual, 1992
Metafile Version 5
Version 4 2/14/1994 1/1/1994 CoC/ACoS Data Acquisition Manual, 1994
SEER Program Code Manual, 1992
WHO ICD-O-2, 1990
SEER Summary Staging Guide, 1977
AJCC Staging Manual, Fourth Edition, 1992
SEER Extent of Disease Manual, 1992
Metafile Version 4

Bolded text indicates changes from previous version.
* Either the date of diagnosis or year first seen for this cancer may have been used by some standard setters. Refer to the Data Dictionary or to the standard setter reference manuals for clarification of date requirements.
** Refer to http://www.cancerstaging.org/cstage/ for Collaborative Stage version information.