9.3 Reportability: What CoC, SEER and NPCR Require, Including Non-Malignant CNS Tumors

Reportability depends on who is asking

The same tumor can be required by one standard setter and not another. A CoC-accredited hospital follows STORE for its NCDB cases and must still follow its state's reporting rules, which usually follow SEER and NPCR, for reporting to the central registry. On the exam, read the stem for "CoC," "SEER" or "central registry" and answer for that standard setter.

Behavior is the starting point

STORE 2025: tumors CoC programs must accession, abstract, follow and submit

Required: malignancies with behavior /2 or /3 at all sites, except:

1. Pilocytic astrocytoma and juvenile pilocytic astrocytoma. For cases diagnosed before 1/1/2023 these were reportable as 9421/3 at CNS sites other than the optic nerve. Beginning with 2023 diagnoses they are reported as 9421/1 at all CNS sites, so they now fall under the non-malignant CNS rules.
2. Carcinoid tumor of the appendix. Code 8240/1 became obsolete in 2015; appendix carcinoid (neuroendocrine) tumors are coded 8240/3 and are required.
3. Skin (C44._) with histologies 8000–8110 is not required. This range includes carcinoma NOS, squamous cell carcinoma and basal cell carcinoma of the skin. Skin cancers diagnosed before 2003 that were stage II–IV remain in the registry and continue to be followed.
4. Intraepithelial neoplasia grade III is not required: carcinoma in situ and CIN III (8077/2) of the cervix, PIN III (prostate), VIN III (vulva), VAIN III (vagina), AIN III (anus), LIN III (larynx), and squamous intraepithelial neoplasia.
5. Beginning with diagnoses on January 1, 2022, these are not required: 8210/2 (adenomatous polyp, high-grade dysplasia) at specified stomach and small intestine sites (C16.0–C16.6, C16.8–C16.9, C17.0–C17.3, C17.8–C17.9); 8211/2 (tubular adenoma, high grade); 8261/2 (villous adenoma, high grade); 8263/2 (tubulovillous adenoma, high grade); and 8483/2 and 8484/2 (HPV-associated and HPV-independent adenocarcinoma in situ of the cervix).

Also required, or specifically addressed:

• Non-malignant intracranial and CNS tumors (behavior /0 or /1) diagnosed on or after January 1, 2004, at these sites: meninges (C70._), brain (C71._), spinal cord, cranial nerves and other CNS (C72._), pituitary gland (C75.1), craniopharyngeal duct (C75.2) and pineal gland (C75.3).
• GIST and thymoma with behavior /3 are reportable from January 1, 2021. GIST or thymoma with multiple foci, metastasis or positive nodes must be coded /3.
• Low-grade appendiceal mucinous neoplasm (LAMN, 8480) is reportable from January 1, 2023, whether in situ or invasive.
• LCIS (8520/2) alone is not reportable to CoC, to match AJCC 8th edition, but SEER and NPCR require LCIS. Follow your state's requirement for the central registry.
• PI-RADS, BI-RADS and LI-RADS categories alone are not reportable for CoC. They become reportable when confirmed by a biopsy or a physician's statement.
• Reportable-by-agreement cases are tumors CoC does not require but that the cancer committee or central registry asks the registry to collect, such as Class of Case 30 cases or pathology-only cases.

Where CoC and central registry rules differ

Skin: what is excluded and what is not

The skin exclusion is defined by site and histology together. It covers only topography C44._ with histologies 8000–8110. It therefore does not exclude:

• Melanoma (8720–8790) of the skin, including melanoma in situ.
• Merkel cell carcinoma (8247/3), adnexal and sweat or sebaceous gland carcinomas (for example, 8400/3, 8407/3, 8410/3), dermatofibrosarcoma protuberans, Kaposi sarcoma (9140/3), and cutaneous lymphomas such as mycosis fungoides (which follow the Hematopoietic Manual).
• Squamous cell and basal cell carcinomas of genital sites that are not coded C44: vulva (C51), vagina (C52), penis (C60) and scrotum (C63.2). These are separate topography codes, so the C44 exclusion does not apply.
• Mucosal sites such as the anal canal (C21.1) and the vermilion lip (C00.0–C00.2).

Perianal skin is coded C44.5 (skin of trunk), so a basal or squamous cell carcinoma of perianal skin is excluded.

Non-malignant CNS tumors in practice

For CNS sites only, "tumor" and "neoplasm" preceded by a reportable ambiguous term are reportable, for example "consistent with pituitary tumor." "Mass" and "lesion" are not reportable terms, even for CNS.

Worked scenarios

1. Invasive SCC of the vulva: reportable. The vulva is C51, not C44, so the skin exclusion does not apply.
2. SCC in situ of the skin of the arm (Bowen disease): not reportable (C44 with histology 8070/2, in the 8000–8110 range).
3. Merkel cell carcinoma of the cheek: reportable (8247/3 is outside 8000–8110).
4. LCIS found at breast biopsy at a CoC hospital: not required for NCDB; report it to the state if the state requires LCIS, as SEER and NPCR registries do.
5. Tubular adenoma with high-grade dysplasia of the stomach (2026): not required by CoC (8211/2 is excluded from 2022). Check state rules.
6. Atypical meningioma: reportable as a non-malignant CNS tumor (9539/1), with Summary Stage 8.