Help us understand more about inherited cancer risk by participating in the FCGN registry...

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 Florida is combined to create a registry that scientists can use for research on cancer.

What are some benefits of being included in the FCGN?
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 Florida 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?
To find out more about participating in the FCGN, please contact JoAnn Runk at (800) 456-3434, ext. 4990, or contact one of the participating centers. 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?”