Cancer Institute A national cancer institute
designated cancer center


Cancer Family Registries

Population Sciences area researchers, including Cancer Epidemiology Program Members and Cancer Prevention and Control Program Members, are collaborating with other researchers to build a number of cancer family registries. These include:

Cancer Genetics Network

Population Sciences area researchers are actively participating in the National Cancer Institute’s Cancer Genetics Network collaborations and studies.

Breast Cancer Family Registry

In 1995, Dee West, Alice Whittemore, Esther John and Sally Glaser were awarded a U01 grant as one of six research centers to collect data for the Breast Cancer Family Registry (B-CFR). This contract was renewed in 2000 with a focus on recruiting minority families.

Using the SEER registry, women are selected through stratified samples based on age, family history and race/ethnicity to participate in the Breast Cancer Family Registry (B-CFR). Selected cases (probands) complete a detailed family history of cancer and an epidemiology questionnaire including a dietary food frequency questionnaire. They also provide blood and tumor tissue to be tested for BRCA1 and BRCA2 mutations, among other biological markers.

To date, 2699 families have been recruited in Northern California. Of the more than 11,000 families currently enrolled in the Family Registry for Breast Cancer from all six centers, about 12% are minorities, most of which were recruited in the San Francisco Bay Area.

The article The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Esther M John, John L Hopper, Jeanne C Beck, Julia A Knight, Susan L Neuhausen, Ruby T Senie, Argyrios Ziogas, Irene L Andrulis, Hoda Anton-Culver, Norman Boyd, Saundra S Buys, Mary B Daly, Frances P O'Malley, Regina M Santella, Melissa C Southey, Vickie L Venne, Deon J Venter, Dee W West, Alice S Whittemore, Daniela Seminara for the Breast Cancer Family Registry provides insight into the background of and purposes for the Breast Cancer Family Registry.

Colorectal Cancer Family Registry

In 2005, Dr. West received funding to recruit African American and Japanese families as part of a NCI grant to the University of Hawaii to pull additional minority families into this international consortium database. Over the five years of this award, an estimated 130 African-American and 140 Japanese-American families will be recruited into this consortium database and will be available to Population Science program members. Populations Sciences researcher are also participating in developing the NCI Breast and Colon Cancer Family Registries

Ovarian Cancer Family Registry

In 1997, Alice Whittemore, Esther John, Valerie McGuire and Dee West received funding to develop an Ovarian Cancer Family Registry (Ovarian-CFR). Employing the model of the B-CFR, the registry recruited select patients and their family members from whom demographic and risk data, as well as blood and tumor specimens, were collected.

Over the ensuing five years, 690 cases and their family members and 340 random controls from the community were recruited. Of these patients, 667 (94%) provided paraffin-embedded ovarian tissue samples.

Ovarian cancer information included in the NCI Breast/Ovarian and Colon Cancer Family Registries.

Prostate Cancer Family Registry

The NCI-funded International Consortium for Prostate Cancer Genetics (ICPCG) is a resource of more than 1,500 multiple-case prostate cancer families, including families from the above study. As members of the ICPCG, population sciences researchers aim is to pursue any promising leads identified in this project.


This document was last modified: Monday, 27-Jun-2011 13:29:21 PDT

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