Standards for Tumor Inclusion and Reportability

Due to continued efforts by standard-setting organizations, facility-based registries and population-based central registries now follow nearly identical standards for determining reportable tumors that are to be included in the registry; however, some differences in reportability remain.

Tumor Inclusion and Reportability Guidelines

*CoC accredited facilities must follow State Central Registry guidelines if they differ from CoC. See the STORE Manual for further guidelines on reportable by agreement guidelines.

Standards for tumor reportability are defined by the following criteria:

Reference Date

The reference date is the effective date when cancer registration starts in a specified at-risk population or in a specific facility. It is not the date the registry is organized, or the date work begins. Tumors diagnosed on or after the reference date must be included. Typically, the reference date is January 1 of a calendar year, but a different date can be used. It is important to be aware that the reference date of the regional, state or provincial/territorial registry may precede the reference date set by cancer registry hospitals or other individual facilities. If the regional, state or provincial/territorial registry is established by law, reporting entities will be required to submit their cases in accordance with the law regardless of their facility reference date.

Residency

For a population-based registry, it is essential to include all tumors occurring in the at-risk population, and rules must be in place for determining the members of that population. The goal is to use the same rules for the patients' demographic data at the time of diagnosis as those used by the Census Bureau in enumerating the population. For example, a population-based registry must have rules for determining residency of part-year residents, institutionalized persons, homeless persons, military personnel, and students. For Canadian registries see appendix T of the Canadian Cancer Registry Collection Documentation for specific instructions.

NAACCR recommends that population-based registries include in their database tumor reports of non-residents from facilities in their catchment areas to:

• Share tumor information with the residents' population-based registry that otherwise may go unreported
• Facilitate death clearance and other record linkages
• Allow preparation of complete and accurate reports to individual facilities

Hospital-based registries are less concerned with residency of the patient than the reason for admission, and hospital registries might not collect data for certain categories of patients that the central registry must include, such as patients admitted to a hospice unit or transient patients who receive interim care to avoid interrupting a course of therapy. Also, CoC does not require complete abstracting of tumors that are “non-analytic” for the facility. Therefore, for the central registry, clear rules that are well documented, widely distributed, and accepted are essential to prevent missed case reports (source records).

In Utero Diagnosis

Diagnoses made in utero are reportable if the pregnancy results in a live birth. In absence of documentation of stillbirth, abortion or fetal death, assume there was a live birth and report the case. When a reportable diagnosis is confirmed prior to birth and disease is not evident at birth due to regression, accession the case based on the pre-birth diagnosis.

Reportable List

CoC, NPCR, SEER and CCCR have achieved greater consensus on reportable tumors in the past few years (see the Comparison of Reportable Cancers: COC, SEER, NPCR, and CCCR table). For all tumors diagnosed from January 1, 1992, through December 31, 2000, all three U.S. standard setters (CoC, NPCR, and SEER) required the inclusion of all neoplasms in the International Classification of Diseases for Oncology, Second Edition (ICD-O-2) with a behavior code of 2 or 3 (in situ or malignant), with the exception of squamous cell and basal cell carcinoma of the skin and carcinoma in situ of the cervix uteri since 1996. (See the CARCINOMA IN SITU OF THE CERVIX, CIN, and THE BETHESDA SYSTEM Section). The CCCR adopted the ICD-O-2 in 1992.

For all tumors diagnosed on or after January 1, 2001, all four organizations require the inclusion of all neoplasms in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3) with a behavior code of 2 or 3 (in situ or malignant), with the exception of squamous cell and basal cell carcinomas of the skin (C44._) with histologies 8000-8005, 8010-8046, 8050-8084, 8090-8110, prostatic intraepithelial neoplasia (PIN) III, carcinoma in situ (CIS) of the cervix, and cervical intraepithelial neoplasia (CIN) III. Morphology code 9421 (juvenile astrocytoma, pilocytic astrocytoma, or piloid astrocytoma), with a behavior code of 1 (borderline) in ICD-O-3, is reportable as 9421/3. Morphology code 9751 (Langerhans cell histiocytosis NOS, cases diagnosed on or after 1/1/2010, Morphology code 9831 T-cell large granular lymphocytic leukemia/Chronic lymphoproliferative disorder of NK-cells, cases diagnosed on or after 1/1/2010, Morphology code 9975 Myeloproliferative neoplasm, unclassifiable/Myelodysplastic/Myeloproliferative neoplasm, unclassifiable, cases diagnosed on or after 1/1/2010, and Morphology code 8240 Carcinoid tumor, NOS of appendix (C18.1), cases diagnosed on or after 1/1/2015. Prior to 2003, basal and squamous skin cancers that were AJCC stage group II or higher at diagnosis were reportable to CoC regardless of the site. Prior to 2007, CIS of the cervix, CIN III, and PIN III were reportable to CCCR.

In addition, the three U.S. organizations require the inclusion of all non-malignant primary intracranial and central nervous system (CNS) tumors diagnosed on or after January 1, 2004. Non-malignant, primary intracranial and CNS tumors of any morphology in ICD-O-3 having a behavior code of 0 or 1 (benign/ borderline) occurring in the following sites: brain, meninges, spinal cord, cranial nerves and other parts of the CNS, pituitary gland, pineal gland, and craniopharyngeal duct are reportable (see the Primary Site Codes for Non-Malignant Primary Intracranial and Central Nervous System Tumors table). The CCCR requires inclusion of all non-malignant primary intracranial and central nervous system (CNS) tumors diagnosed on or after January 1, 1992. Specifically, non-malignant primary intracranial and CNS tumors of any morphology in ICD-O-3 having a behavior code of 0 or 1 (benign or borderline) occurring in the following sites: brain, meninges, spinal cord, cranial nerves and other parts of the CNS are reportable (see Canadian Cancer Registry Collection Documentation). As of June 1, 2007, this was expanded to include the pituitary gland, pineal gland, and craniopharyngeal duct.

In Situ/Invasive

It is important to distinguish between the morphologic condition of in situ as it is represented in ICD-O behavior codes and Tis as it is defined for the purpose of prognostic staging in the AJCC Cancer Staging Manual. Some morphologic and disease descriptive terms that are invasive in ICD-O or localized in the SEER Summary Staging Guide/SEER Summary Staging Manual 2000 and the Summary Stage 2018 (SS2018) are Tis in the AJCC Cancer Staging Manual. Some examples are:

• Paget's disease of the nipple (8540/3) (an “invasive” code in ICD-O-2 and ICD-O-3) with no underlying tumor is classified as Tis in AJCC Eighth Edition.
• Lobular Carcinoma in situ (LCIS) is removed from TNM staging in the AJCC Eighth Edition but is still reportable and should be abstracted and coded according to SS2018 and EOD Primary Tumor 2018.
• LCIS is not reportable to CoC as of 2018 to align with AJCC Eighth Edition.
• For colon/rectum, “invasion of the lamina propria” (intramucosal) with no extension through the muscularis mucosae into the submucosa is classified as Tis according to AJCC Eighth Edition and EOD Primary Tumor 2018 but localized in SEER Summary Stage 2018.

Some tumors classified as invasive in the behavior code can be classified as Tis or Stage 0 when staged according to AJCC TNM guidelines. These differences should be considered when data are being compared.