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Data Management Procedures

Standards for data management procedures for hospitals (institution) and population-based registries have been defined by different standard setters. However, the scope of operations is similar: staff training and qualifications, case inclusion, case ascertainment, procedures for adding new cases to the permanent data set, rules for updating or changing data on file, follow-up, data exchange, and data analysis and publication.

Hospital registry operational requirements are defined by the Standards of the Commission on Cancer, Volumes I, II, III, and IV. Specific standards are also defined by SEER and NPCR.

For the most part, differences in data management standards reflect differences in registry operation and are not contradictory. For example, central registry case ascertainment standards require coverage of all facilities that care for cancer patients, whereas individual registries must check the records of all services in the facility in which cancer patients may be identified.

However, registrars generally must comply with more than one standard for case inclusion. CoC specifications for facility registries identify the types of cases for which the facility, or its staff, have care responsibility. Many states require reporting of cases specifically excluded from CoC rules because central registries use this information to form a consolidated record for the patient from all sources. Hospitals occasionally collect data for cases not required by CoC or state/central registries. Benign brain tumors, pre-leukemic conditions, and similar diagnoses may be included by local standards.