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Breast Cancer Prospective Family Study Cohort (ProF-SC)
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Sample details

The ProF-SC commenced in 1992 with women from 11,171 families ascertained through population-based and clinic-based sampling and who cover the full spectrum of familial risk of breast cancer. Families were from the United States, Canada, and Australia. At baseline, this cohort of women over the age of 18 years included 18,853 unaffected and 12,787 affected with breast cancer. Multi-generational cancer family histories were sought from all participants who were administered the same baseline epidemiology questionnaire. Blood samples have been collected from 83% of participants, and another 2% have DNA available through buccal samples of participants and used for extensive genetic characterisation.

Study design
Cohort

Number of participants at first data collection

31,640 (participants)

Age at first data collection

≥ 18 years (participants)

Participant year of birth

Varied (participants)

Participant sex
Female

Representative sample at baseline?
No

Sample features

Cancer patients
Women
Dataset details
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Countries

Australia, Canada, United States of America

Year of first data collection

1992

Primary Institutions

Columbia University

Kathleen Cuningham Foundation Consortium for research into Familial Breast cancer (kConFab)

Links

bcfamilyregistry.org/ongoing-grants/profsc

Profile paper DOI

doi.org/10.1093/ije/dyv118

Funders

National Cancer Institute (NCI)

National Institutes of Health (NIH)

Ongoing?
Yes

Data types collected

dataLinkage
Quantitative data collection
  • Interview – phone
  • Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
  • Secondary data
  • Self-completed questionnaire – paper or computer assisted
Qualitative data collection
  • None
Neuroimaging data collection
  • None
Linked or secondary data
  • Healthcare data
  • Mortality data
Features

Engagement

  • Community engagement
  • Keywords

    Biological samples/biospecimens
    Breast cancer
    Disease prevention
    Family health history
    Genetics
    Risk factors

    Consortia and dataset groups

    Breast Cancer Family Registry (BCFR)
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