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Data Standards and Data Dictionary

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The term “pre-invasive cervical neoplasia” refers to carcinoma in situ of the cervix and conditions viewed as equivalent to it or on a continuum with it. Diagnostic terminology for pre-invasive cervical neoplasia has changed significantly over time, from the four-tiered system of dysplasia and carcinoma in situ, to the three-tiered system of CIN, to the two-tiered Bethesda System, with high- and low-grade squamous intraepithelial lesions (SIL). In the past, cancer registries generally considered carcinoma in situ of the cervix reportable, but they differed in which of these other terms they considered synonymous with carcinoma in situ and hence reportable. Consequently, data were not comparable over time or across registries.

NAACCR convened a multidisciplinary working group in April 1993 to review the problem and make recommendations for its membership. The recommendation was that “population-based registries discontinue routine collection of data on pre-invasive cervical neoplasia unless there is strong local need and interest, and sufficient resources are available to collect all [high-grade squamous intraepithelial lesions] and its equivalent terms.” NAACCR and NPCR adopted this recommendation at that time. SEER and CoC adopted it effective for cases diagnosed January 1, 1996, forward. CCCR adopted it effective for cases diagnosed June 1, 2007.

Ambiguous Terminology

In most circumstances, the diagnosis of cancer, as recorded in the patient’s medical record, is clearly synonymous with reportable cancer. However, in those situations where the physician is not certain of the diagnosis, the associated terminology in the medical record reflects that uncertainty and is ambiguous. CoC, NPCR, SEER and CCCR are in agreement in regard to the list of terms that are diagnostic of cancer and the list of terms not diagnostic of cancer. These terms are shown in the “Comparison of Reportable Cancers: COC, SEER, NPCR, and CCCR” table