Individual Study / BCFR

Breast Cancer Family Registry Cohort

Breast Cancer Family Registry Cohort

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Initiatives -
Start Year
National Cancer Institute
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Investigators Contacts
  • Dr. Prof Mary Beth Terry
    Columbia University Mailman School of Public Health
  • Dr. Prof Esther John
    NIH-Division of Cancer Control and Population Sciences


Study design
Population cohort
Follow Up
Selected participants are being followed to obtain updated information on cancer and vital status of family members. For the clinic-based families in the USA, at least one participant from each family is contacted annually to update personal and family cancer histories and deaths, as well as some exposures addressed in the core epidemiology questionnaire. In Ontario, an annual mailed follow-up questionnaire to case probands seeks to update births, deaths, and new cancer diagnoses of case probands and family members. The San Francisco site contacts case probands annually by telephone to update information on cancer and vital status of the proband and family members. In Australia, passive record linking to state cancer registries and death certificates is being conducted, and the medical records of case probands have been followed up for recurrence and death.

Marker Paper

John EM, Hopper JL, Beck JC, Knight JA, Neuhausen SL, Senie RT, Ziogas A, Andrulis IL, Anton-Culver H, Boyd N, Buys SS, Daly MB, O'Malley FP, Santella RM, Southey MC, Venne VL, Venter DJ, West DW, Whittemore AS, Seminara D; Breast Cancer Family Registry. The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Breast Cancer Res. 2004;6(4):R375-89. doi: 10.1186/bcr801. Epub 2004 May 19.

PUBMED 15217505


Sources of Recruitment
  • Families

Number of participants

Number of participants
Number of participants with biosamples


Availability of data and biosamples


Availability of access information

On the study website :