Northern California Family Registry for Breast Cancer

Principal Investigator:
Esther M. John, Ph.D.
Alice S. Whittemore, Ph.D. (Stanford University), Mary Beth Terry, Ph.D. (Columbia University), Irene Andrulis, Ph.D. (Mount Sinai Hospital, New York), John Hopper, Ph.D. (University of Melbourne), Saundra Buys, M.D. (Huntsman Cancer Center), Mary Daly, M.D., Ph.D. (Fox Chase Cancer Center)
Funding Source:
National Cancer Institute
Funding Period:
Study Website:
In 1995, the National Cancer Institute established the Breast Cancer Family Registry to facilitate studies of the genetic origins of breast cancer.  To find the genes that cause breast cancer, a breast cancer patient, her sisters, mother, and children, if possible, are asked to participate in a study.

The Northern California Family Registry for Breast Cancer (FRBC) at the Cancer Prevention Institute of California (CPIC) is partnered with similar registries in the U.S. -- the San Francisco Bay Area, New York City, Philadelphia and Salt Lake City - and internationally - Ontario, Canada, and Melbourne/Sydney, Australia. Through this partnership, this registry has enrolled over 12,000 breast cancer families, as well as women without a prior history of breast cancer, who serve as population controls for research studies.

The staff of FRBC work with the breast cancer patient, and ask her sisters, mother, and children, if possible, to participate in a study. Participants are asked about their 
family history of breast and other cancers, hormonal and lifestyle factors, dietary intake based on a food frequency questionnaire, and self-reported breast cancer treatment information. DNA and archived tumor tissue from previous procedures formay be collected from individuals diagnosed with breast cancer.

The research team also conducts annual follow-up appointments with registry participants to assess the occurrence of new cancers in the enrolled families.

The Northern California site, led by Dr. Esther John, has recruited and followed 4,000 families. Among these enrolled participants, there is a substantial representation of racial/ethnic backgrounds and includes families with triple negative breast cancers.

The data made available through this work have been widely used throughout the scientific community in numerous collaborative studies and has contributed many new insights into the genetics of breast cancer.

Click here for an infographic highlighting the FRBC's 20th anniversary. 

Newsletters for Family Registry Participants

To learn more about the Family Registry for Breast Cancer, read our newsletters:

Spring 2016 Winter 2015
Fall 2013 Fall 2007 (Spanish version)
Spring 2012 Fall 2006
Summer 2010 Fall 2006 (Spanish version)
Fall 2007 Archives

Collaborative Studies and Publications

The data and biospecimen resources from the six collaborating family registries are available to qualified researchers worldwide. The Steering Committee for the Family Registry for Breast Cancer reviews applications to collaborate. For information on the application process, visit the Collaborations page on the Breast Cancer Family Registry website.. To date, over 100 research studies on a wide range of topics have been approved.
See the full list of research publications.

Participate Confidentiality

The research team maintains confidentiality of all data by assigning a study identification number to each registry participant. It does not share any personal information, such as names or addresses, with collaborating researchers. 

For more information about the international FRBC consortium, see:

© Cancer Prevention Institute of California