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Welcome to
the Family Cancer Genetics Network (FCGN) Website! The FCGN is a
new resource to help answer important questions about inherited
risks for cancer. Through this site you may find out more
about the Family Cancer Genetics Network, how to enroll in the
network, or learn more about hereditary cancer.
For more information
about the Family Cancer Genetics Network, please call the FCGN line
at: 1-800-456-3434, extension 4990.
Click on a link
below to learn more about the FCGN:
The
FCGN Mission
The Family Cancer Genetics Network
(FCGN) is a national program of cancer genetics centers, providing
clinical care, education and research. FCGN consists of
physicians, genetic counselors, nurses, social workers, researchers,
and cancer patients and
their families.
The
FCGN centers are working together to create a registry
of individuals who want to learn about, and possibly participate
in research to better understand the genetic basis of cancer susceptibility.
If you have had cancer or have a blood relative who has had cancer,
you may wish to become part of our cancer registry. For people
with a personal and/or family history of cancer, registering in
FCGN offers a unique opportunity to keep up to date on cancer genetics
and potential opportunities to participate in studies. Registry
members will receive practical information on cancer genetics and
new research developments through our newsletter.
The
History of the FCGN
The Cancer Genetics Program at Moffitt organized the First Annual
Florida Cancer Genetics Network meeting, in Tampa in April, 1998.
Members of current and anticipated cancer genetics counseling and
testing programs in Florida were invited, and five centers participated.
The meeting provided an update on the delivery of cancer genetic
services in Florida and an opportunity for each of the centers to
share information about their programs. The centers
agreed on the need to network and collaborate, and planned to meet
on an annual basis.
The second annual
Florida Cancer Genetics Network meeting was held in Orlando in April
1999. Eleven centers participated. The meeting focused on insurance
issues, impact of genetic testing, and impact of the genetic counseling
and testing process on individuals. The formal development of a
Florida Cancer Genetics Network was proposed by HLMCC at this meeting
and the other centers expressed support for this concept and an
interest in participation.
The third annual
Florida Cancer Genetics Network meeting was held in February 2000
in West Palm Beach. Representatives from thirteen Florida centers
currently providing cancer genetic counseling and testing services
participated. Speakers from two of the centers presented information
on laboratory testing for cancer susceptibility and chemo-prevention
for hereditary breast and ovarian cancer. A special guest lecture
by Dr. Henry Lynch on cancer genetics and syndrome identification
was presented. The progress on the FCGN was presented and a discussion
with the centers followed.
"What
is the FCGN registry?"
The FCGN
registry is a new resource to help answer important questions about inherited
risks for cancer. Information provided by people in
the registry from across the United States is combined to create
a registry that scientists can use for research on cancer.
"What
are some benefits of being included in the FCGN registry?"
You can
help researchers and society learn more about genetics and cancer.
You will receive regular updates on cancer and genetics research.
You will be informed about special research studies for which you
may be eligible.
“Who
can participate in the FCGN registry?”
Individuals with the following background are welcome to participate
in the FCGN registry:
- Have a personal
or family history of cancer.
- Are at least
18 years of age.
Volunteers like
you will be the core of the FCGN registry. The quality of
the research depends on having as many individuals participate as
possible. By being a part of the Family Cancer Genetics Network,
you will be an important partner in the battle against cancer.
“What
will participants be asked to do?”
Participants will be asked about their medical and family
history. This can be done by telephone, or by questionnaires completed
at home or at an FCGN center. Periodically, you will be
contacted for follow-up to be sure the information stays up to
date. Researchers will use the information from all the registry
members for cancer genetics research. For specific studies,
depending on your family or medical history, you may be contacted
about further participation, which could include additional questionnaires,
educational activities, a blood sample, or providing permission
to review some of your medical records. You will have the
option to accept or decline additional participation. You
can withdraw from the registry at any time.
“How
is my confidentiality protected?”
The information you and other participants provide will be used
for research purposes only and will be kept strictly confidential,
as required by law and our research protocols. Any information
that can identify you will be separated from any other information
before it is entered in the database. Your name will never
be used without your permission. If any researcher wants to
invite you into a research study for which additional information
will be collected, a member of the local FCGN staff will contact
you first. This research project is covered by a Certificate of
Confidentiality issued by the Secretary of the U.S. Department of
Health and Human Services. The Certificate protects
against the involuntary release of information about you collected
during the course of this study, although such information can be
released if you or your guardian requests it in writing. The
researchers involved in this project cannot be forced to disclose
your identity or any information about you collected in this study
in any legal proceedings at the Federal, State, or local level,
regardless of whether they are criminal, administrative, or legislative
proceedings. However, the Certificate does not prevent the
review of your research records under some circumstances (for example,
under the Federal Food, Drug and Cosmetic Act or during internal
review by the Institutional Review Board as a part of their responsibility
to protect people participating in research).
“What
kinds of questions will the research try to answer?
Scientists will try to answer questions about cancer and genetics,
such as:
- How common
are the inherited genetic changes that cause cancer?
- Why do some
people with inherited genetic changes develop cancer and others
do not?
- How does
a person’s lifestyle interact with genetic changes to cause or
prevent cancer?
- How can we
use our new knowledge to help prevent cancer?
- How can we
improve cancer treatments?
- How can people
cope better with cancer and cancer risk?
“Will
I be told the results of any research conducted using information
I provide to the network?”
All participants will receive a newsletter twice a year containing
research findings, progress reports, information about new studies,
etc. Some individual results will be available (depending
on the specific research performed) and participants will be asked
if they wish to receive these results. For other research,
individual results will not be possible, but general results will
be available, such as “30% of the individuals in the study were
found to have the gene.”
"Who
is conducting this study?"
The FCGN is a collaborative project of the H. Lee Moffitt Cancer
Center & Research Institute/University of South Florida Cancer
Answers and other cancer centers across the state of Florida.
"How
can I participate in FCGN?"
You can participate by clicking here and following the instructions to provide us information
about your family cancer history. If you have questions about participating in the FCGN,
please contact JoAnn Runk at (800) 456-3434, ext. 4990. Have more questions about cancer?
For additional information on cancer, contact the Cancer Information Service,
funded by the National Cancer Institute, at 1-800-4-CANCER or
Print the brochure: “Does Cancer Run in Your Family?”
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