Scope of Standards

Except as a record of individual case progress, all uses of cancer registry data involve compilations of data in statistical summaries. The interpretation of compiled data requires uniformity of data elements and consistent use of codes. Consequently, even if universal standards do not exist, most registries institute local guidelines to meet their immediate needs for data consistency.

Interest in shared or uniform registry standards for data collection and management has grown with the increasingly varied use of registry data, stimulated by the adoption of computerized registry data systems. Contemporary standards for registry data and data management emphasize standardization of the data. That is, for items characteristically collected by cancer registries, the same codes are applied, coded by the same rules, and edited and updated according to the same guidelines. When standard rules for case inclusion or exclusion and standard grouping procedures are also followed, the resulting incidence, survival, and response rates have the same meaning no matter where they are produced. For registry data to be used optimally, uniform standards are necessary.

Registry standards address diagnostic codes and general registry operations. The field of oncology data collection has continued to grow, especially since the advent of widespread computerization of registries. Clinical, epidemiological, and surveillance groups, as well as, organizations evaluating data quality, became increasingly interested in pooling or consolidating registry data. Data are pooled when records from multiple sources are combined into a single, large database; each record represents a unique case. Data that are compiled separately are compared for presentation in a single publication. When multiple records applying to a single case are included, the data are consolidated to form a single, more complete and accurate record.