The BCSC conducts studies to assess and improve the delivery and quality of breast cancer screening and related outcomes. We collaborate with external investigators on funded research in this area.
As an alternative to collaboration, a set of downloadable public use datasets are freely available. No formal approval process or consultation with the BCSC is required to use these datasets.
We also share datasets from published BCSC papers.
Collaborating with the BCSC on a research project
The BCSC shares custom datasets and conducts data analyses as part of funded research collaborations. In these collaborations you will work with one or more BCSC investigators and with the BCSC Statistical Coordinating Center (SCC) as described in the Guide to Working with BCSC Data (PDF).
If you have an idea for a research project with BCSC, you can contact the SCC at kpwa.scc@kp.org or a BCSC Investigator to explore project feasibility and options for proceeding. Your BCSC contact will work with you to develop a brief concept proposal for review by the BCSC Steering Committee. If your concept proposal is approved, your BCSC contact will then work with you to develop a full, detailed proposal for review.
Requests for data or analysis for collaborative projects
Requests for custom BCSC datasets or SCC analysis must meet these conditions:
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The project does not compromise the confidentiality of patients, radiologists, or facilities.
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The purpose of the study is research.
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The BCSC PIs agree that the research question is of high scientific or public health value.
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The research proposal is sufficiently detailed to determine if the proposed analysis is feasible.
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BCSC data are of sufficient quality and completeness to address the study question or aim.
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Funding is available to support the collaboration of a BCSC investigator or investigators and to cover the costs of dataset preparation (and analysis if relevant) at the SCC.
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There is no significant overlap with current or planned research.
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Because the SCC is not allowed to share cancer registry and vital status data from some BCSC sites according to state law and DUAs, either (1) the analysis can be done externally without those data, (2) the external investigator obtains permission from the relevant state departments, or (3) the SCC does the analysis.
BCSC data are managed by the SCC and include information on demographics, risk factors, breast imaging and follow-up, and outcomes such as breast cancer. Because the data are associated with individuals, maintaining patient, provider, and facility confidentiality is a top priority. All personal identifiers for patients and providers have been removed from the data.
Guidelines for Developing Manuscripts in a collaborative project
If a funded collaboration is approved, you will continue to work closely with your BCSC co-investigator(s) throughout your project. The BCSC has Collaborative Writing Guidelines (PDF) to guide successful manuscript development for scientific papers.
To use BCSC data for publication, collaborating investigators must:
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Acknowledge BCSC for its contributions to the manuscript (instructions will be provided).
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Submit a final draft of the manuscript to the BCSC Steering Committee for approval before submission for peer review.
Obtaining data from a published BCSC paper
To request a dataset from a published BCSC paper, contact the lead or corresponding author or contact the SCC at kpwa.scc@kp.org.
FAQs
If I have a project idea, who do I contact?
You can contact the SCC at kpwa.scc@kp.org, a BCSC registry Principal investigator, or other BCSC investigator.
Does BCSC data fit my project?
To better understand the BCSC data, see the distributions of key variables and other information, tables, and graphs on the Data Elements & Questionnaires and Statistics pages. See also the BCSC Data Explorer data query tool.
How representative are the BCSC data?
BCSC data reflect breast imaging practice as performed in the community in the U.S. Women in the BCSC reflect the population of U.S. women who undergo breast imaging. A comparison of counties in the BCSC catchment areas with 2000 census data shows that BCSC sites are located in counties that contain slightly more than 5% of the nation's population. BCSC counties reflect the national population in important respects:
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BCSC counties |
All other US counties |
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Sociodemographic Characteristics |
Median Family Income |
$55,189 |
$50,984 |
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Percent Unemployed |
3.4% |
4.1% |
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% with High School Degree |
84.5% |
80.2% |
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% of Women Aged 40+ |
22.0% |
22.7% |
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Sociodemographic Characteristics in Women Aged 40+ |
Percent Hispanic |
6.9% |
7.3% |
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Percent Black |
8.9% |
10.9% |
What is the usual timeline from submitting a proposal to the SCC to receiving the data or analysis results?
The timeline varies depending on funding, the grant timeline, and staff availability at the SCC. In general, it takes about 3-8 months to provide data or analysis results after a project begins, depending on complexity. Projects with ongoing planned analyses will set their own timeline.
How much will a custom data request cost?
The pricing for custom BCSC data requests depends on data complexity and staff effort required to compile the data. The SCC and BCSC leadership will develop a quote for the data request. The final quoted cost will be based on our experience and reflect the study design, number of variables needed, our experience working with those variables and whether the variables have been fully vetted in the past (especially, are the variables very clean or do they require manipulation or combination with other variables to be used), whether computed variables have already been created or need to be developed, the complexity of applying the inclusion/exclusion criteria, whether longitudinal information needs to be linked from different data sources (on the level of the exam, woman, pathological specimen, cancer), and how much input is needed from an SCC biostatistician/epidemiologist to ensure the data will meet the study aims. Most of the funding goes to programmer effort to prepare the dataset, plus a small amount for the SCC project manager and PI. If a biostatistician is needed, that effort is added.
As described above, data request complexity varies, but generally, a simple dataset (such as an updated version of a dataset used for a previous publication) is about $12,000-18,000 in direct costs. Moderately complex datasets (such as generating a new dataset with regularly used BCSC variables and with minimal statistical manipulation) are typically $18,000-$30,000. Complex datasets (such as new datasets with new or less-used variables or requiring significant statistical manipulation) are about $30,000 and up. The cost of data requests will be negotiated case by case. Please allow 6-8 weeks for consultation to negotiate and generate a formal budget for your data request. Preparing the dataset will then take about 2-8 months, depending on project complexity and staff availability (we can estimate the timeline when we discuss the project), including time to establish a formal agreement. Please note that these listed costs are direct costs only. Institutional indirect costs will be added at the standard Kaiser Permanente Washington Health Research Institute rate.