National Cancer Institute
  • About Us
    • Our Mission
    • Our History
    • Funding
    • FAQ
  • For Participants
    • Newsletters
    • Resources and Events
    • Participating Sites
    • Privacy
  • For Researchers
    • Data Sharing
    • Collaborations
    • Questionnaires
    • Summary Data
  • Our Studies
    • Young Women’s Study
    • ProF-SC: Prospective Family Study Cohort
    • LEGACY Girls Study
  • Findings
    • Highlights
    • All Publications
  • Contact
Breast Cancer Family Registry

Summary Data – Updated Jan 2019

TABLE 1: Family Recruitment

Male Female Total
Population-based families 14060
Affected1 with breast cancer 119 10739 10858
Unaffected2 with breast cancer 5486 15940 21426
Total population-based individuals 5605 26679 32284
Clinic-based families 2760
Affected1 with breast cancer 44 2514 2558
Unaffected2 with breast cancer 1343 3903 5246
Total clinic-based individuals 1387 6417 7804
Total Individuals 6992 33096 40088
Total Families 16820

Notes

1Affected is defined as individuals diagnosed with breast cancer as of 1/23/2019

2Unaffected is defined as no personal history of breast cancer as of 1/23/2019

TABLE 2: Family Data for Population-Based Families

Male Female Total
All Individuals in Population-based Families
Baseline epidemiology data1 4957 25551 30508
1st follow-up epi data 2341 10492 12833
2nd follow-up epi data 45 10494 10539
3rd follow-up epi data 0 7652 7652
Baseline food frequency questionnaire data 2218 17131 19349
Blood/buccal samples 2696 18856 21552
Tumor tissue2 46 2823 2869
Treatment information3 77 6645 6722
Affected4 Individuals in Population-based Families
Baseline epidemiology data1 107 10172 10279
1st follow-up epi data 34 4463 4497
2nd follow-up epi data 1 4910 4911
3rd follow-up epi data 0 3950 3950
Baseline food frequency questionnaire data 92 8039 8131
Blood/buccal samples 96 9182 9278
Tumor tissue2 46 2823 2869
Treatment information3 77 6645 6722
Unaffected5 Individuals in Population-based Families
Baseline epidemiology data1 4850 15379 20229
1st follow-up epi data 2307 6029 8336
2nd follow-up epi data 44 5584 5628
3rd follow-up epi data 0 3702 3702
Baseline food frequency questionnaire data 2126 9092 11218
Blood/buccal samples 2600 9674 12274
Tumor tissue2 0 0 0
Treatment information3 0 0 0

Notes

1Baseline epidemiology questionnaire data (excluding proxy completion)

2Individuals diagnosed with breast cancer and at least one tumor specimen obtained (blocks, slides and/or tissue microarrays [TMAs]).

3Self-reported treatment information for individuals diagnosed with breast cancer

4Affected is defined as individuals diagnosed with breast cancer as of 1/23/2019

5Unaffected is defined as no personal history of breast cancer as of 1/23/2019

TABLE 3: Family Data for Clinic-Based Families

Male Female Total
All Individuals in Clinic-based Families
Baseline epidemiology data1 1291 6123 7414
1st follow-up epi data 548 4058 4606
2nd follow-up epi data 11 4458 4469
3rd follow-up epi data 0 2475 2475
Baseline food frequency questionnaire data 1024 4876 5900
Blood/buccal samples 1279 6012 7291
Tumor tissue2 15 1041 1056
Treatment information3 35 1732 1767
Affected4 Individuals in Clinic-based Families
Baseline epidemiology data1 41 2414 2455
1st follow-up epi data 21 1508 1529
2nd follow-up epi data 0 1581 1581
3rd follow-up epi data 0 901 901
Baseline food frequency questionnaire data 30 2006 2036
Blood/buccal samples 43 2374 2417
Tumor tissue2 15 1041 1056
Treatment information3 35 1732 1767
Unaffected5 Individuals in Clinic-based Families
Baseline epidemiology data1 1250 3709 4959
1st follow-up epi data 527 2550 3077
2nd follow-up epi data 11 2877 2888
3rd follow-up epi data 0 1574 1574
Baseline food frequency questionnaire data 994 2870 3864
Blood/buccal samples 1236 3638 4874
Tumor tissue2 0 0 0
Treatment information3 0 0 0

Notes

1Baseline epidemiology questionnaire data (excluding proxy completion)

2Individuals diagnosed with breast cancer and at least one tumor specimen obtained (blocks, slides and/or tissue microarrays [TMAs]).

3Self-reported treatment information for individuals diagnosed with breast cancer

4Affected is defined as individuals diagnosed with breast cancer as of 1/23/2019

5Unaffected is defined as no personal history of breast cancer as of 1/23/2019

Also on the BCFR Website:

Ongoing Grants

Find out more about our ongoing studies, such as the ProF-SC grant.

Publications

Read highlights from recent publications utilizing BCFR data.

Initiating Collaborations

If you would like to utilize data from the BCFR, please read our data sharing policies and contact us to initiate this process.

Funded by the National Cancer Institute (NCI), NIH, DHHS

BCFR Team click here to login

Site designed and developed by Social Ink [+]