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UNC Lineberger Comprehensive Cancer Center

For Researchers

Dr. Melissa Troester and the Carolina Breast Cancer Study are committed to the scientific value of collaboration and to training the next generation of cancer researchers. Since 1993, CBCS has produced profiles on over 5,000 cases of female breast cancer in eastern and central North Carolina that includes public health data, epidemiological surveys, medical records abstraction, histological analyses, and some genomic/transcriptomic surveys.

The data analyzed in this study are available from the Carolina Breast Cancer Study. Restrictions apply to the availability of these data, which were used under data use agreements for this study. Data is not publicly available; however, investigators may submit a letter of intent to gain access upon reasonable request.

Study Population – CBCS3

CBCS has been designed primarily to investigate female breast cancer epidemiology, treatment, and outcomes by intrinsic subtype and by self-identified race. CBCS’s dataset is particularly useful as public health experts, the medical community, and scientists recognize and look into the racial disparities in breast cancer incidence, treatment, and outcomes. Phase 3 in particular of CBCS oversampled people who identify as Black or African American relative to their population proportion.

(Note: Dr. Melissa Troester and the Carolina Breast Cancer Study recognize that race is not an intrinsic biological category but rather is a socially constructed system of disparately categorizing people based upon physical and/or genealogical characteristics. The effects of that categorization have real effects on people’s experiences before, during, and after a breast cancer diagnosis.)

CBCS FAQs: Study Population and Available Data

Bar graph from Carolina Breast Cancer Study, Phase 3 Total Number of Participants. Data shown in race and age cohorts. Black, age 20 to 49, 741 participants. Non-Black, age 20 to 49, 751 participants. Black, age 50 to 74, 754 participants. Non-Black, age 50-74, 752 participants.

CBCS3 used Rapid Case Ascertainment at the North Carolina Central Cancer Registry to identify all cases of breast cancer diagnosed while the person (all self-identified female, aged 20-74) resided within a 44-county region of eastern and central North Carolina. This region included both rural and urban geography. In order to better understand the incidence of the four major intrinsic subtypes of breast cancer (i.e., luminal A, luminal B, basal-like, and HER2+/ER-), the differential incidence of these subtypes by age and race, and the worse outcomes among young Black women, the study oversampled self-identified Black/African American women and younger women (age < 50 years).
CBCS3 more than doubled the number of Black/African American women enrolled in Phase I (1993-1996) and Phase II (1996-1999).

Bar graph from Carolina Breast Cancer Study, Phase 3. Breast Cancer Recurrence through April 20, 2021. Data shown in race and age cohorts. Black, age 20 to 49, 141 participants. Non-Black, age 20 to 49, 85 participants. Black, age 50 to 74, 105 participants. Non-Black, age 50-74, 77 participants.

CBCS3 continues to trace participants’ health after their initial breast cancer diagnosis, tracking breast cancer recurrence through our annual or biennial contacts. This data is from April 2021. It will be updated periodically as new cases are reported during our active follow-ups.

Bar graph from Carolina Breast Cancer Study, Phase 3. ER Positive Primary Tumor, by Pathology Report. Data shown in race and age cohorts. Black, age 20 to 49, 431 participants. Non-Black, age 20 to 49, 559 participants. Black, age 50 to 74, 490 participants. Non-Black, age 50-74, 614 participants.     Bar graph from Carolina Breast Cancer Study, Phase 3. PR Positive Primary Tumor, by Pathology Report. Data shown in race and age cohorts. Black, age 20 to 49, 330 participants. Non-Black, age 20 to 49, 493 participants. Black, age 50 to 74, 334 participants. Non-Black, age 50-74, 483 participants.

CBCS3’s data surrounding our ER+ and PR+ cases are among our most requested data for sharing. We combine medical facilities’ pathology reports with our own immunohistochemical analyses to create a more accurate profile of each participant’s tumor histology.

Bar graph from Carolina Breast Cancer Study, Phase 3 of Stage of Cancer by Race and Age Cohorts. Black, age 20 to 49: Stage 1, 192. Stage 2, 367. Stage 3, 147. Stage 4, 34. Non-Black, age 20 to 49: Stage 1, 291. Stage 2, 331. Stage 3, 105. Stage 4, 23. Black, age 50 to 74: Stage 1, 320. Stage 2, 291. Stage 3, 103. Stage 4, 39. Non-Black, age 50 to 74: Stage 1, 422. Stage 2, 236. Stage 3, 81. Stage 4, 13.

Most enrolled participants had an early-stage carcinoma. Late-stage or metastatic are not well-represented in the CBCS3 study population.

Study Instruments

Summary
Baseline
Follow Ups
Click here for an overview of the rationale and methods for CBCS’s biospecimen collection and analysis. A downloadable version is available here.

Study Publications

We maintain a PubMed collection with all CBCS that can give a fuller picture of what research questions the CBCS can help answer.

Data Sharing Process

We welcome requests to collaborate from credentialed researchers and their post-doctoral fellows and graduate students. Especially as CBCS is an ongoing study, we have ethical and moral duties to safeguard our participants’ privacy. Besides requiring that most projects must be reviewed and approved by an Institutional Review Board, this also means that CBCS cannot share certain data as complete de-identification is not yet possible.

As you formulate your study question, we believe the information above will allow you to know if the CBCS has the data to help you answer your question. Then, please complete and submit the data sharing interest form below. Dr. Troester will review your submission to check for scientific integrity and that CBCS has sufficient data to help answer your research question.

After review by the principal investigator, at that time you may be invited to formally submit a Letter of Intent. Approval, if granted, comes from the study’s Steering Committee.

Upon approval by the Steering Committee, once study staff receives confirmation of IRB approval and you sign CBCS’s Data Use Agreement and Authorship Acknowledgment, the requested data will be made available to you.

Are you a graduate student or postdoctoral fellow of the CBCS Principal Investigator, a Co-Investigator, or member of the Steering Committee developing a project under their direction and supervision? Then, in lieu of the form below, please follow this link to submit your proposal or contact the Project Director, Heather Tipaldos, for special instructions.

Publishing Your Research

CBCS requires that all publications include its Acknowledgements. Studies that use CBCS’s PAM50 Gene Expression data must also include the Conflict of Interest statement as well. Likewise, CBCS is a study enabled by Rapid Case Ascertainment of the North Carolina Central Cancer Registry. RCA requires that publications include its Acknowledgments, too. (Please save these links for future reference.)

The CBCS State of Ethics appears with the Acknowledgements and Conflict of Interest.

Also, as CBCS is dedicated to training the next generation of breast cancer researchers, CBCS wishes to provide its writing and publishing checklist. Geared towards graduate students and other first-time first authors, this covers manuscript preparation through getting PMCID’s for articles upon publication.