Skip to main content
An official website of the United States government
Grant Details

Grant Number: 2U01CA164920-11 Interpret this number
Primary Investigator: Terry, Mary Beth
Organization: Columbia University Health Sciences
Project Title: Breast Cancer Family Registry
Fiscal Year: 2023


ABSTRACT. The Breast Cancer Family Registry (BCFR) Cohort is a well-characterized international cohort of multi-generational families that from its inception in 1995 has supported interdisciplinary collaborative research. Across six sites in the U.S., Canada, and Australia, we recruited and continue to follow 33,037 women and 6,992 men from 15,056 families. Unlike cohorts of unrelated individuals, the BCFR Cohort enables a broad and deep investigation of factors that modify breast cancer susceptibility and affect outcomes both before and after diagnosis due to the unique characteristics of the cohort, including the full spectrum of familial and genetic risk and the large proportion of women recruited under 45 years of age (n=12,384 (37%) at enrollment). The BCFR Cohort is diverse with 26% of families from populations underrepresented in research (6% Asian/Pacific Islander, 6% Black, 8% Hispanic, 5% mixed ethnicity). We have created and maintained comprehensive biospecimen resources (e.g., cell lines, DNA, plasma, tumor tissue). We have followed individuals who were unaffected (n=27,753) or affected (n=12,276) with breast cancer at enrollment for up to 26 years (average length of follow- up = 19.1 and 15.8 years, respectively), and we have prospectively ascertained 1,062 incident breast cancers and 1,105 second breast cancer events (e.g., recurrences, second primary breast cancer) in the unaffected with breast cancer and affected with breast cancer at baseline sub-cohorts, respectively. During the past four years, we have expanded recruitment and enrolled 701 young women under age 45 years. In the next five years we propose to further enrich the BCFR Cohort using a systematic and coordinated approach across all six BCFR sites over the next five years by 1) expanding the Cohort through enrollment of 1,090 young women who are newly diagnosed with breast cancer before age 45 years and at least one first degree relative, increasing the racial, ethnic, and socioeconomic diversity (78% of young breast cancer families will be from underrepresented populations); 2) enhancing the value of the full BCFR Cohort by following all participants through efficient data linkages to environmental exposure and outcome databases (e.g., cancer and death registries); 3) maintaining and expanding the biospecimen resources, including collection of plasma for cell-free DNA and urine; and 4) continuing to promote and expand the use of BCFR resources by external investigators and large consortia around the world. By including several novel components, we aim to answer questions on the role of life course on accumulation of risk, critical windows of exposure, and the factors underlying the increase in breast cancer incidence in young women. We will continue to serve as a resource to the international research community with extensive epidemiologic and molecular data. We remain focused on addressing clinically important research questions on breast cancer susceptibility, outcomes, survival and survivorship and remain committed to reducing the breast cancer burden through discovery-based research about breast cancer development and progression.