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National Cancer Institute   U.S. National Institutes of
Rapid Response Surveillance Studies
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 Technical Aspects of Registry Operations

Improving Technical Aspects Of Registry Operations

The goal of registry operations research is to assess and improve the accuracy of data collection and thereby improve the process of cancer surveillance. The RRSS studies contribute to a greater understanding of registry operations by investigating the quality of data collected and the process of data collection. In addition to these studies, NCI supports training for individuals working in cancer registration and surveillance, including Internet-based training.

RRSS investigators are conducting studies to:

  • address the accuracy of registry data on race, ethnicity, and birthplace and evaluate policies and practices regarding the collection of such data;
  • investigate the quality of cancer survivor data on American Indians living in the lower 48 states;
  • determine the quality and completeness of data in the SEER database compared to administrative databases;
  • address issues resulting from new data collection mandates:
    • determine the feasibility and costs of complete brain tumor registration;
    • investigate the surveillance of nonmalignant tumors of the central nervous system (CNS); and
    • evaluate the resources needed to routinely collect data on CNS tumors that are benign or of uncertain behavior;
  • develop an Internet-based training program for cancer registration and surveillance; and
  • assess the feasibility of collecting body height, weight, and obesity measures in a cancer registry.

Registries Funded to Conduct these Studies

Atlanta (Metropolitan)
Detroit (Metropolitan)
Los Angeles
New Mexico
Northern California Cancer Center (SF-OAK)
Seattle (Puget Sound)

Key Findings

Collection of data on benign brain tumors approximately doubles the amount of data on all brain tumors collected by each registry.

Foreign birthplace data derived from medical records or death certificates is often incomplete and its accuracy is unknown. It is necessary to improve the collection of these data in order to use birthplace information in research studies.

Future Use

Data from these studies are used to assess and improve the quality and efficiency of registry operations.


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