Trial Information

Breast Cancer Surveillance Consortium Data Resource

The BCSC is a collaboration of breast imaging registries formally established in 1994 with
support from the National Cancer Institute (NCI). As the BCSC SCC, we coordinate
standardized data collection, pool data from the registries, develop statistical
methodology, conduct statistical analyses for research projects, and share data with within
and beyond the consortium. The current BCSC database consists of data collected by five
active mammography registries and two inactive registries:

- Carolina Mammography Registry in North Carolina (CMR)

- Group Health Registry in Seattle, Washington (GHC)

- New Hampshire Mammography Network (NHMN)

- San Francisco Mammography Registry (SFMR)

- Vermont Breast Cancer Surveillance System (VBCSS)

- New Mexico Mammography Project in Albuquerque (NMMP)

- Colorado Mammography Advocacy Project (CMAP)

These registries have been actively collecting data since 1994 or 1996 (depending on
registry) including patient risk factors, clinical history, breast-imaging procedures
(screening and diagnostic), benign and malignant pathology results, cancer outcomes, vital
status, radiologist characteristics, and facility information. Some registries have data
going back to the 1970s; however, this information is mostly used to determine prior breast
cancer diagnoses and mammography exposure. Most analysis limit data to 1994 forward.

Registry procedures:

BCSC data will be shared using 4 main approaches:

1. Completed deidentified datasets and summary statistics made publicly available on the
internet.

2. A web-based data query tool for automatically creating user-specified completely
deidentified data sets and summary statistics.

3. Customized data sets created by the Statistical Coordinating Center (SCC) and delivered
to investigators using secure methods, after BCSC steering committee approval of a
research proposal.

4. Statistical analyses performed by the SCC, after BCSC steering committee approval of a
research proposal.

Quality factors:

The data used by the BCSC have been previously collected directly from each BCSC registry.
The BCSC database has no personal identifiers such as names, phone numbers, addresses, or
social security numbers and no one in the population will be contacted for additional data
collection. The data set only contains HIPAA limited identifiers: dates, ages >89, and ZIP
codes.

It is possible that new data will be collected under this contract as determined by the BCSC
Steering Committee. This could include corrections to the current data, updates to existing
data elements (e.g., additional radiology data, updated cancer and vital status outcomes),
or new data elements (i.e., information about advanced imaging modalities, cancer
biomarkers). New data will not contain personal identifiers. Individual-level data will
never be shared unless rigorously examined and approved by the Steering Committee (which
will include the principal investigators from each BCSC site) and the appropriate IRB
safeguards are in place.

Our major objective for this contract is to maintain the current high standards of the BCSC
database with no interruption in service to the scientific community. We will continue to be
a resource to the research community, providing scientific and statistical expertise and
conducting high-quality statistical analyses to advance breast cancer research. We will
expand outreach and dissemination, so that more investigators are aware of this valuable
resource and use it for their research. Our second objective is to develop new electronic
interfaces and publicly available datasets that meet the highest possible standards for
caBIG® compatibility. This will facilitate efficient sharing of BCSC data and expand
potential for collaboration, increasing its value to the broader research community. Our
ultimate aim is to facilitate research that improves breast cancer screening and reduces
cancer burden and mortality.