About the Breast Cancer Family Registry

What is the Breast Cancer Family Registry?

The Breast Cancer Family Registry (BCFR) is a large study of families who are at increased risk of breast and ovarian cancer based on family history or genetic mutations. The BCFR combines health information and biological samples from 30,000 women and men from nearly 12,000 families from the United States, Canada, and Australia. Breast cancer scientists around the world use the information in the registry to research new ways to prevent, diagnose, and treat cancer.

How does the BCFR help with cancer research?

Researchers use the information in the BCFR to study how genes, lifestyle, and our environment may lead to cancer. The family-based design of this study helps us understand inherited risk for breast cancer. The BCFR collects data from the same families and individuals over time. This allows us to examine how certain factors may affect risk throughout the different stages of a person’s life.

Researchers will use what they learn from the BCFR to recommend what families at increased risk of breast cancer can do to prevent cancer.

Who can take part in the BCFR?

We want to expand the BCFR to include more young women ages 18–39 years. We hope to learn what factors during those years may have lasting effects on breast tissues, and whether those effects may lead to an increased risk for breast cancer later.

What do participants need to do?

If you agree to participate, we ask you to do these things:

  • Fill out questionnaires that ask about your family, your personal health history, and your health behaviors
  • Download and use health apps that collect information about your menstrual cycles and your physical activity
  • Answer a yearly follow-up questionnaire, for a minimum of five years, so that we can update the registry on your health and make sure you’re still willing to participate in the registry
  • Provide a saliva sample and mail it to our study site with the provided packaging material (optional)
  • Sign a release authorization form for us to get a copy of your mammogram or breast MRI results, if any
  • Give additional biological samples such as blood, saliva, or urine

We also offer breast optical spectroscopy, which is a laser light that measures breast characteristics. This takes place in our clinic and is optional.

Contact

For more information, contact Karen O'Toole at 801-581-8795 or Karen.O'Toole@hci.utah.edu.