Standard Setters

The following three organizations were involved in the development of standard codes for describing the cancer itself: The World Health Organization (WHO), the American Cancer Society (ACS), and the American Joint Committee on Cancer (AJCC) developed standard codes for topography, morphology and extent of tumor spread.

The following three organizations shaped standards for facility and population-based registries. The Commission on Cancer of the American College of Surgeons (CoC), defined the role of the facility registry in cancer management. The National Cancer Institute's Surveillance Epidemiology and End Results Program (SEER) developed procedures for central registry monitoring of data quality and the National Program of Cancer Registries (NPCR), administered by the Centers for Disease Control and Prevention, added incentives for population-based central registries to adhere to guidelines.

The following two organizations overlap the others in time and purpose. Although all standard setting agencies run training programs, the National Cancer Registrars Association (NCRA) develops training programs specifically for registrars. The North American Association of Central Cancer Registries (NAACCR) promotes the development of standards shared by member central registries and the standard setters that sponsor it.

The National Cancer Data Base (NCDB) and the Uniform Data Standards Committee (UDSC) of NAACCR are joint efforts of the organizations already mentioned.

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The World Health Organization (WHO)

After the United Nations was established, the World Health Organization became the organization responsible for publishing disease codes. The International Statistical Classification of Disease and Related Health Problems, 10th revision (ICD-10), is the most recent edition in a series that began in 1893. It forms the basis for the International Classification of Diseases for Oncology, 3rd edition (ICD-0-3),and the worldwide diagnosis coding system. This was fully revised in ICD-10 and the topology codes are distinctly different from the earlier editions. ICD-10 can be purchased on diskette complete with a file for use in coding software.

The ICD-10 disease codes for cancer are primarily topographical, though special codes that combine topographic and morphologic characteristics of some cancers were added as the series evolved. The ICD-0 manuals provide registries with topography codes, from the ICD disease code tradition, and morphology codes developed from codes originally published by the American Cancer Society.

The American Cancer Society (ACS)

The American Cancer Society published the Manual Of Tumor Nomenclature and Coding (MONTAC) in 1951. That early document served as the basis for a series of refinements in cancer morphology codes, including the Systematized Nomenclature Of Pathology (SNOP) and later the Systematized Nomenclature Of Medicine (SNOMED), published by the College of American Pathologists, and the International Classification of Disease for Oncology, (ICD-0-3), published by the World Health Organization.

The American Joint Committee on Cancer (AJCC)

The American Joint Committee on Cancer has guided the development, implementation, and use of the TNM (Tumor-Node-Mestatasis) cancer prognostic system in America since 1959. The clinically oriented TNM staging scheme was developed by the AJCC in cooperation with the TNM committee of the International Union against Cancer (UICC) and is used worldwide for prognostic staging of cancers.

The AJCC regularly updates its staging standards to incorporate advances in prognostic technology. Current work concerns development of prognostic indices based on molecular markers that access the rate at which tumors grow. AJCC is committed to improving the predictive accuracy of the TNM system and making the system accessible and useful to the practicing clinician.

The Commission on Cancer (CoC) approvals program requires AJCC staging for all sites with defined staging schemes.

The Commission on Cancer of the American College of Surgeons (CoC)

In 1912, the Clinical Congress of Surgeons of North America created a proposal calling for "standardization of surgeons," which resulted in the formation of the American College of Surgeons in 1913. Their second proposal was for the "standardization of hospitals," which led to the founding of the Joint Commission on Accreditation of Hospitals in 1918. (Now called the Joint Commission on Accreditation of Healthcare Organizations [JCAHO]). The Board of Regents appointed the Cancer Campaign Committee (now known as the Commission on Cancer) in 1913. That committee started the process of outcome analysis of cancer cases based on stage and treatment.

The Surveillance, Epidemiology and End Results (SEER) Program

Two National Cancer Institute (NCI) programs, the End Results program and the Third National Cancer Survey, preceded SEER. The SEER Program was established under the National Cancer Program by the National Cancer Act of 1971; data collection began in January 1973. For further information, go to SEER's Website.

The National Program of Cancer Registries (NPCR)

The Cancer Registries Amendment Act (Public Law 102-15), enacted by Congress in 1992, authorized the Centers for Disease Control and Prevention (CDC) to administer the NPCR. The intent of the federal law was to improve cancer control by encouraging development of state level population-based central registries whose data would conform to uniform standards. NPCR provided planning grants to states without central registries and grants to enhance existing state population based cancer registries. For further information, go to NPCR's Website.

National Cancer Registrars Association (NCRA)

This organization, formerly the National Tumor Registrars Association, was founded in 1974. NCRA has played a vital part in the professional development of cancer registrars. NCRA developed and maintained a variety of programs for training cancer registrars. The first certification exam (Certified Tumor Registrar -- "CTR") for cancer registrars was offered in 1983. Begining in 2003, NCRA will administer the CTR exam which used to be administered by the National Board for Certification of Registrars. NCRA provides ongoing training for cancer registry staff and mechanisms for communication between registry staff and other standard setting organizations through its publications, annual conferences, workshops, and continuing education credit program. In recent years, NCRA has expanded its scope to include registrars working in registries of diseases other than cancer. As of January 1, 2024 the CTR credential has been renamed to ODS: Oncology Data Specialist.

The North American Association of Central Cancer Registries (NAACCR)

The North American Association of Central Cancer Registries (NAACCR) was established in 1987 to meet the needs of central cancer registries. Central registries in the United States and Canada use NAACCR as a forum to resolve problems, establish shared standards, and improve the quality and consistency of central registry operations. NAACCR took on the challenge of coordinating standards developed by other groups, developing standard codes and procedures not addressed by any single organization, and evaluating the quality of central registry data with respect to use of the data for cancer control.

The National Cancer Data Base (NCDB)

A joint effort by the American Cancer Society and the American College of Surgeons, the National Cancer Data Base (NCDB) collects data from computerized hospital cancer registries for use in evaluating cancer trends and treatment patterns in analytic research. Data submission to the NCDB, required for the first time in 1996, reinforces the importance of standard code definitions for all CoC approved registries.

The Uniform Data Standards Committee (UDSC) of NAACCR

The UDSC compiles coding, editing, and data exchange standards, including remaining unresolved issues, which are published and disseminated by NAACCR. The work of UDSC built on earlier joint efforts of CoC and SEER, under the auspices of NCRA, to find ways to coordinate disparate codes and data sets.

By agreement of the participants, items under consideration for change by the standard setters that define data elements collected by registries are reviewed by the UDS committee. Consideration of a proposed change includes the logical structure of the code (will it do what is intended?), continuity with past data (can the new code be collapsed for comparison with earlier codes?), reason for the change (due to technological developments or to correct an existing inconsistency), and underlying theory. Most proposals are resolved by adoption of the new standard (or retention of the old one) by all.

Apparent persistent inconsistencies in codes often reflect differences in underlying theory. That is, codes that might appear to measure the same thing do not, and they differ in respects that remain important to the participating organizations. An example is the distinct codes that measure cancer spread at diagnosis.