The PEDIGREE Moms Study is a new supplement to the PEDIGREE Study which involves recruitment of the first generation of the CHDS, the mothers. The PEDIGREE Moms Study is asking first generation participants with a history of breast cancer to provide access to a copy of their breast cancer pathology report and tumor tissue sample. For more information on the PEDIGREE Moms Study breast cancer pathology report and tumor tissue sample collection please click here.
The PEDIGREE Moms Study is funded by the Breast Cancer and Environment Research Program (BCERP), a joint effort co-funded by the National Institute of Environmental Health Sciences (NIEHS) and the National Cancer Institute (NCI). BCERP supports a multidisciplinary network of scientists, clinicians, and community partners. BCERP was founded in 2003 to examine the effects of environmental exposures that may predispose a woman to breast cancer throughout her life. By including scientists from many areas of research there is facilitated translation of research findings to new treatment options and intervention programs.
Women who are in the first generation of the CHDS (moms) who have been diagnosed with breast cancer are eligible for the PEDIGREE Moms Study.
If you are eligible for the PEDIGREE Moms Study and have been diagnosed with breast cancer you may be asked to give your permission for the CHDS to obtain a copy of your breast cancer pathology report and tumor tissue sample. Details on providing this information are included in your invitation letter. For more information on the PEDIGREE Moms Study breast cancer pathology report and tumor tissue sample collection, please click here.
- Why are you asking me to provide authorization of my pathology report and tumor tissue sample?
Pathology reports and tumor tissue samples provide details about the type of cancer and how it behaves. Different types of cancer may have different causes. To understand how to prevent breast cancer, we need to be able to identify the type of cancer a person has. - What will you do with my pathology report and tumor tissue sample?
Pathology reports will be reviewed to determine the characteristics your pathologist found. For example, some pathology reports include information about whether estrogen can make a tumor grow. We will also request a tumor tissue sample from the hospital where you had your surgery. Either the hospital or another laboratory will take a small slice from the tumor tissue sample for us. The remainder of your tumor tissue sample will remain at the hospital. As part of this study, we will look for markers and characteristics, including DNA, that will provide information about how your tumor developed and grew. - How will I know if I am chosen to provide permission for the CHDS to obtain my pathology report and tumor tissue sample?
You will be sent a special invitation letter if you have been identified to participate in the PEDIGREE Study. If you have been selected and you have been diagnosed with breast cancer, we will ask your permission to obtain a copy of your pathology report and tumor tissue sample. You will be sent medical release forms to sign for this purpose. - Can I get results of the breast cancer pathology report or tumor tissue sample study?
At this time, we are not able to provide individual results about any tests we do with your breast cancer pathology report or tumor tissue sample. Testing of the collected reports and samples will be done in a research lab and the tests are not for clinical use (meaning they are not intended to be used by doctors for diagnosing or treating medical problems). Scientific findings from the study are based on data from combined results of individual samples. We will share study results with you through our website, newsletters, and publications in scientific journals. We are happy to provide you final study reports or reprints of any journal articles, when they are completed, at your request to the study director, Dr. Cohn. As the findings of the study are published, the CHDS and 3Gs websites will be updated to include summaries of these results. - How did you know I had been diagnosed with breast cancer?
We received information about your breast cancer diagnosis either from a previous study you participated in with the CHDS or from the California Cancer Registry. In your invitation letter to the PEDIGREE Moms Study, we identify the source of this information.
The California Cancer Registry (CCR) was created by the California State Legislature to help find the causes and cures of cancer. Every new cancer diagnosis in California is required by law to be reported to the CCR. Information about individuals diagnosed with cancer can only be released for research purposes to qualified researchers who meet rigorous ethical and procedural standards set by the State of California Committee for the Protection of Human Subjects and who agree to maintain the confidentiality of the information they collect. We have been granted permission by the CCR to contact you about this study.
At this time, we are not able to provide individual results about any tests we do with your pathology report or tumor tissue sample. Testing of the collected reports and samples will be done in a research lab and the tests are not for clinical use (meaning they are not intended to be used by doctors for diagnosing or treating medical problems).
There is no obligation to participate – your decision is completely voluntary. Participation in PEDIGREE Moms is not required for you to still be part of the CHDS and the other studies we conduct.
Making sure your information is kept private is a top priority for us. If you chose to participate in the PEDIGREE Moms Study, your identifying information will be kept confidential by study staff using federal privacy guidelines for research studies.
Please see our Privacy Practices page to learn more about how we protect your confidentiality.