What is the Breast Cancer Family Registry and how does it work?

The Breast Cancer Family Registry is a program established in 1995 in the USA, Canada and Australia with funding from the National Cancer Institute. The Breast Cancer Family Registry has enrolled over 11,000 families and collected information and blood samples from individuals who have a history of breast or ovarian cancer and from their family members.

The information collected from families is stored confidentially in the Family Registry database. It serves as a resource for scientists world-wide who are doing research on the causes, prevention, treatment, and prognosis of breast cancer.

The Northern California Family Registry has enrolled 4,000 breast cancer families from the San Francisco Bay Area.

How were people selected to be in the Northern California Family Registry?

We obtained names of breast cancer patients from the California State Department of Health Services which is responsible for the California Cancer Registry.  The California Cancer Registry was created by the California Legislature in response to public concerns that more needed to be done to find the causes and cures for cancer.  Doctors, hospitals and other facilities that diagnose and treat cancer patients are required by law to report cancer-related information to the California Cancer Registry.

However, the California Cancer Registry is permitted to release contact information on individual patients ONLY TO CANCER RESEARCHERS WHO MEET STRINGENT REQUIREMENTS.  Researchers must demonstrate that their research project has scientific merit and they also must have approval from a federally approved human subjects review board and agree in writing to maintain the confidentiality of the cancer patients and data.  Then, and only then, are researchers provided with the names of patients to contact for their study.

After a breast cancer patient agreed to be part of the Family Registry, we then asked for permission to contact select family members, such as sisters or parents.

Can I participate in the Family Registry?

At this time, we have reached our initial recruitment goals for the Family Registry and are no longer recruiting new families. However, opportunities for participation in new Family Registry studies may become available in the future. If you are already participating in the Family Registry, you can read about our follow-up activities here.

How is my privacy protected?

All data collected by the Family Registry are kept in the strictest confidence.  We take the protection of personal information very seriously and safeguard your personal information in a number of ways.

All questionnaire data and biological samples that you provided are identified by a unique study number.  Your information and samples are labeled with this study number only and are stored separately from your name, address and other personal information.  Only a small number of authorized Family Registry study staff who have signed a legally binding confidentiality agreement have access to the personal information.  No one else will ever know of your participation unless you inform them. Importantly, we do not share with family members any information on your medical history or other data you provided.

Researchers who are interested in using data from the Family Registry must first obtain approval from the Principal Investigators of the Breast Cancer Family Registry.  Upon approval, only information and samples identified by your study number will be shared with the approved researchers. No names or addresses will ever be shared with collaborating researchers. 

Why is it important for members of my family to participate?

Relatives are really important to the success of the Family Registry.  Family members share many of the same genes and they also may share a common environment and have similar lifestyle factors like diet and physical activity.  Learning more about blood relatives of women with breast cancer helps us to understand how all of these factors affect breast cancer risk and why some family members may develop breast cancer while others do not.

To do this, we encourage all participants to talk to their relatives about the Family Registry and let them know what an important role they can play in our efforts to learn more about the causes and prevention of breast cancer and to encourage them to participate if they are contacted by the Family Registry.

Why can’t my brother/daughter/spouse participate?

Generally speaking, a woman has more genes in common with her sisters and her parents than with either her brother(s) or daughter(s) and has no genes in common with her spouse.  For this reason, family studies like the Family Registry, have traditionally focused more on sisters and parents than other relatives to study the genetic factors affecting breast cancer.

However, there are circumstances when these other relatives would be asked to participate, including:  a daughter who has been diagnosed with breast, ovarian or childhood cancer, a spouse who is the father of this daughter, a brother who has been diagnosed with breast cancer himself, or a brother who is in a family with neither a participating mother or sister.

In 2011, we started the LEGACY Girls Study, which includes daughters and, in some cases, granddaughters, of women enrolled in the Family Registry. You can read more about this very exciting study in young girls, by visiting the official LEGACY website.

Why is it important for me to give a blood sample?

Simply stated, a blood sample is one of the most important pieces of information we collect from Family Registry participants.  From a blood sample of about 3 tablespoons, we obtain DNA, the body’s genetic material, which is used to learn more about the influences of genetic alterations on breast cancer risk.

Using the blood sample along with the questionnaire data is the only way we can answer important questions about the role of genetics, lifestyle, and environment in the development of breast cancer, as well as treatment and survival after diagnosis.

If you are a Family Registry participant and have not yet given us a blood sample, we encourage you to provide this very important resource for breast cancer research. We have experienced professional phlebotomists who can schedule a blood donation anywhere in the Greater San Francisco Bay Area at a convenient time that fits your schedule.  If you live farther away, or prefer to have your health care provider draw your blood, we can help you make the arrangements.

Will you be doing genetic testing on my blood sample?

Yes, some approved research studies have done genetic testing on Family Registry participants. We have tested DNA for alterations in BRCA1, BRCA2, ATM, CHK2, and many other genes. This information will help us identify new genes that are important for breast cancer, and better understand how genetics, together with lifestyle and environmental factors, influence the development of breast cancer.

Can I have the results of genetic tests on my blood?

We are not able to release individual genetic test results because the genetic testing in Family Registry participants takes place in research laboratories. We are therefore not permitted to release individual results from genetic testing done as part of research studies. 

We are aware that there is increasing interest on the part of our participants to get their test results.  We can refer you to clinics that offer genetic counseling and testing in a clinical setting.

How do I benefit from participation?

Many Family Registry participants express satisfaction for having made a contribution to breast cancer research through their participation.  The knowledge gained from the research made possible by your participation will contribute to a better understanding of the causes of breast cancer, as well as treatment and survival after diagnosis, benefitting society as a whole, and future generations.

How will I learn about the results of the studies using the information I am providing?

Our website includes information on publications from the Family Registry.  Additionally, our participants receive an annual newsletter that includes information about results of our on-going work, as well as information about new studies based on the Family Registry.  Please contact us if you are interested in a copy of a particular scientific article.

How often will the Family Registry be contacting me?

Now that we have completed the recruitment of new families, we contact participating families about once a year for updates. We are currently doing the follow-up using a short mailed questionnaire. We will also be contacting you for future follow up efforts and questionnaires.

In addition, the Family Registry sends out biannual mailing of spring cards and newsletters. To read our newsletters please click here.