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This page links to some files in Portable Document Format (PDF).
Data Elements and Questionnaires
When the Consortium was established in 1994, one of its first tasks was to identify the data elements that were necessary to evaluate mammography screening performance in diverse community settings. This necessitated consensus on a standard set of core variables, definitions for analysis, and a standard definition of a screening mammographic examination. Data on these core variables are collected through questionnaires given to women when they come for a mammogram and to the radiologist or technician who evaluates the mammogram at the screening facility. The data are being used to build three databases that can be linked with each other and with pathology data on cancer outcomes from population-based cancer registries:
The variables for each of these databases are shown in the Summary Listing of Data Elements.
Summary Listing of Data Elements
* Variables with asterisks are optional for sites using non-Surveillance, Epidemiology, and End Results (SEER) Program registries.
Sample Standardized Questionnaires
Unlike multicenter clinical trials that use a common protocol and common data collection instruments, the research projects in the BCSC must operate within existing health care systems. Data are being collected from a range of delivery systems, including traditional fee-for-service, solo and group radiology practices, managed care organizations, free-standing mammography centers, mobile van programs, hospital-based radiology practices, and nonradiology practices.
To facilitate pooling data across sites as well as to allow direct comparison of different regions, the Consortium has standardized the questions included on the questionnaires. The Consortium is working with the American College of Radiology BI-RADS™ Committee to determine how data collected in these two systems might be made more compatible. The standardization is aimed at how the questions are asked and answered. Centers can develop their own instruments and choose their data collection method -- scannable questionnaires, computer responses, or simple form completion.
Because of the diversity of data collection sites and varying availability of data, the Consortium decided to allow some flexibility in the data that are collected, with some variables considered "core (required)" and others "optional." Sites also can choose whether to include questions on the optional variables and can include additional questions for their own use.
The sample questionnaires, with core and optional items are provided here (as PDF files). Optional items are shown in shaded boxes in the sample forms. As our understanding evolves of which mammography screening factors should be examined, some of these questions may change. New versions of the questions will be posted here as they become available.
Recent site-specific questionnaires are available below in PDF format.
Carolina Mammography Registry | Metro Chicago Breast Cancer Registry | Group Health | New Hampshire Mammography Network | Vermont Breast Cancer Surveillance System |
San Francisco Mammography Registry
|Funded by: HHSN261201100031C and P01CA154292||
Last modified: June 2016
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