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Study Description

The Breast Cancer Family Registry (BCFR) is a multi-center prospective cohort, comprised of over 30,000 women and men from nearly 12,000 families from the United States, Canada, and Australia. Our BCFR resource has been used, and continues to be used, by breast cancer researchers around the world in order to find new ways to prevent, diagnose, and treat cancer.

The BCFR provides an extensive and diverse range of resources, expertise, and specialized skills, and has several unique strengths: 1) the collection of a large number of individuals and families across a wide spectrum of breast cancer risk, including both affected and unaffected individuals; 2) the large collection of families with early-onset breast cancer; 3) the large collection of racial/ethnic minority families not replicated elsewhere; 4) the extensive molecular characterization performed to date; and 5) active follow-up of both probands and family members. Thus, the BCFR comprises a unique cohort of probands and family members at familial/genetic risk of breast cancer that will continue to facilitate a wide range of research studies, such as gene discovery, examination of cancer-related outcomes and risk factors in high-risk subjects, investigation of novel behavioral interventions, and cancer prevention trials among at-risk family members. Consequently, the BCFR Cohort, as one of the few cohorts available worldwide with biospecimens and extensive molecular and genetic characterization, combined with epidemiologic data and long-term follow up, will be an invaluable resource for translational research in the genetic epidemiology of breast cancer.

Authorized Access
Publicly Available Data (Public ftp)
Study Inclusion/Exclusion Criteria

Eligibility into the BCFR was based on one or more of the following criteria:

  • Two or more relatives with a personal history of breast or ovarian cancer
  • A woman diagnosed with breast or ovarian cancer at a young age
  • A woman with a history of both breast and ovarian cancer
  • An affected male
  • Known BRCA1 or BRCA2 mutation carriers
  • The Australian site also enrolled twin pairs in which one or both members had a personal history of breast cancer (PMID: 15217505)

Individuals are included in this dataset if they are women under the age of 80 at baseline who completed baseline questionnaires (n=32,726 women). This dataset excludes proxy questionnaires.

Study History

BCFR Timeline

1995: Initial funding from the National Cancer Institute (NCI) for the BCFR begins; 6 research sites begin Baseline data collection

2000: Renewal of NCI funding to continue with cohort establishment

2006: Renewal of NCI infrastructure funding to conduct the 10-year follow-up of the cohort

2011: New NCI grant to conduct the 15-year follow-up of the cohort and establish the Prospective Family Study Cohort (ProF-SC) in collaboration with the Kathleen Cuningham Foundation Consortium for research into Familial Breast Cancer (kConFab) study

2012: Renewal of NCI infrastructure funding to update family history and epidemiological data through research questionnaires, expand the cohort with additional family members and expand scientific collaborations

2018: Renewal of NCI infrastructure funding to conduct the 20-year follow-up of the cohort, expand the cohort through the recruitment of female family members under the age of 40 years, and continue to expand scientific collaborations

Selected Publications
Diseases/Traits Related to Study (MeSH terms)
Links to Related Genes
Links to Related Resources
Authorized Data Access Requests
See research articles citing use of the data from this study
Study Attribution