Download Inherited Breast and Ovarian Cancer Study Brochure

time, however, will be spent completing a
questionnaire. We may request either a blood or
buccal/saliva sample. If you’re asked to provide
a blood sample, you may send your bill for
blood collection to the Mayo Clinic so that you
will not be charged. There is no cost associated
with the buccal/saliva collection. If you choose
not to participate, you will not jeopardize
present or future medical care and treatment at
the Mayo Clinic or other benefits to which you
may be entitled.
What About My Privacy?
All information that you or your relatives
provide will be kept strictly confidential. In
addition, research test results are not part of
your medical history while being used for
research purposes and would only become part
of your medical record if you chose to learn any
results in the future.
Inherited Breast and
Ovarian Cancer Study
Who to Contact?
Fergus Couch, Ph.D., Investigator
(507) 266-0878 or [email protected]
Jodie Cogswell, Study Coordinator
(855) 371-7673 or [email protected]
If no answer, please leave your name and
telephone number and your call will be
returned.
Address:
Mayo Clinic
Inherited Breast and Ovarian
Cancer Study
Charlton 6
200 First Street SW
Rochester, MN 55905
MC4118-06rev0615
Proband
Inherited Breast and Ovarian Cancer Study
Each year approximately 230,000 new cases
of breast cancer are diagnosed in American
women. While most cancers occur by chance,
some families develop cancer more frequently
than one would expect by chance alone,
possibly indicating a shared inherited (genetic)
cause for the cancers. Increasing age, a family
history of breast or ovarian cancer, and other
environmental and lifestyle factors can increase
a woman’s risk of developing this disease.
There have been several exciting advances in
the understanding of genes involved in breast
cancer with at least 16 new genes now linked to
increased risk of these cancers. Clinical testing
for mutations in these genes is now widely
used. However, the risks of cancer associated
with deleterious mutations in many of these
genes are not firmly established. In addition,
clinical testing frequently identifies Variants
of Uncertain Significance (VUS). These are
mutations that may or may not be involved
in cancer. As a result, patients with mutations
or VUS in the breast cancer genes, and their
healthcare providers, may not know how to
use these genetic testing results to manage their
clinical care.
About the Study
A group of doctors and scientists at the Mayo
Clinic in Rochester, Minnesota, are working
together to advance our understanding of
breast cancer. Our goals are to define the risks
of cancer for deleterious mutations and VUS in
the clinically tested genes.
Who Should be Involved?
Women and men who have been found to have
deleterious mutations or VUS in breast cancer
genes. Relatives who may or may not have had
cancer, may also be asked to participate in the
study.
What is Involved in the Study?
As a study participant you will be asked to:
1. C
omplete a response form with your contact
information and sign a study consent form.
2. The initial family member contacted will
be asked to complete a family history form
providing cancer history for their relatives.
After we review this family history, we
may ask for permission to contact selected
relatives.
3. Complete a questionnaire regarding health
history and additional risk factors.
4. Possibly authorize release of your medical
records and/or tumor sample from any
previous cancer surgery from your physician
to Mayo Clinic investigators participating in
this study.
5. Provide a buccal/saliva sample. The saliva kit
can be used to collect some loose cells in your
mouth that can be used as a source of DNA.
This sample can be collected in the privacy
of your own home and a pre-stamped return
mailer will be provided.
What are the Benefits of Participation?
Participants in this research project may assist
researchers in understanding the risk of cancer
associated with mutations in breast cancer
genes or in understanding which VUS are
associated with an increased risk of cancer. We
hope that participants find pleasure in knowing
that their efforts are improving medical science,
with a potential to improve the health care of
their family and of future generations.
Will Test Results be Shared with Me?
This research will likely not result in
information directly helpful to your personal
health care. However, if a researcher finds that
some of the results from these studies, either
positive or negative, may be clinically relevant,
you will be contacted and given the choice to
learn these test results. In that situation, the
results would be released to you through a
genetic counselor or other genetics professional.
What are the Costs of Participation?
There are no monetary costs to you as part
of your participation in the study, with the
exception of the cost of the genetic counseling
session, relevant only if you choose to learn
any test results in the future. Some of your