| Standards are rules set by
the governing authority. They reflect the organizational
data needs of standard setters, including the need for
consistency among groups. It is no accident that the history
of oncology data standards is closely linked to groups
that shaped their development. The standards that apply
to cancer registries today evolved over the last century.
The standard setters identified in this section established
the principles of |
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registry data and continue to influence cancer registry operations
today. Their goals help determine what registries collect
and how the data are processed and ultimately used. Within
their spheres of responsibility, they are also the primary
authorities to address questions on data and data management.
Registry data collected in the absence of shared standards
contribute little beyond anecdotal data towards case management
or cancer control. Shared standards ensure clarity of communication,
protect the integrity of data when pooled or compared across
multiple sources, and focus attention on key aspects of cancer
of care or cancer control.
Data collected by a cancer registry are useful on several
levels. The cancer registry records personal and medical information
necessary for planning and evaluating the patient's case management.
The registry data provides administrative information for
facility planners, cancer committees, and practitioners. When
the data are consolidated by population-based central registries,
they are used by government and private agencies for developing
and evaluating cancer control programs. Registries provide
a rich source of data for investigative cancer research.
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.
Central registries including state registries, the National
Cancer Data Base (ACDB), the North American Association of
Central Cancer Registries (NAACCR), the Surveillance, Epidemiology
and End Results (SEER) program, the NPCR program, and other
joint projects; collect data submitted electronically from
multiple source registries. Without shared data-coding standards,
the submitted data has to be reformatted and interpreted.
Central registry administrators were among the first to realize
the inconsistencies among contributing registries in data
content, despite what seemed to be shared codes and procedures.
Registries should obtain current information directly from
the governing bodies that affect their operations.
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