UCLA's Family Cancer Registry is a repository of information about people who have had cancer or have a family history of cancer. This information can include:
- Complete pedigree data, or the tracing of certain cancers through a family tree
- Survey data on lifestyles, health behaviors, and other characteristics
- Biological specimens such as tissue or blood samples
- Results of genetic susceptibility testing
What is the purpose of a Registry?
The purpose of the UCLA Family Cancer Registry is to collect information from people and families who may share possible genetic risks of cancer. The Registry makes this information available to researchers who study how these cancers develop, and how they might be prevented, treated, and cured. Without a registry, it could take years for an individual researcher to identify enough families and collect the key information needed to conduct a study. By gathering all of this information into a centralized clearinghouse, a registry can help speed the pace of cancer research, and the search for effective treatments and cures.
Through the Registry, it is also possible for people to find researchers who may specialize in a certain type of cancer, and for researchers to find people who may be interested in taking part in cancer research studies.
Who can join the Registry?
The UCLA Family Cancer Registry collects information from both those who have or have had cancer, as well as healthy individuals who may carry a genetic risk for developing cancer. If you:
- Have a type of cancer known to run in families;
- Have a strong family history of cancer, that is, two or more blood relatives who have had the same type of cancer;
- Have a family history of cancers that are known to be related, such as breast and ovarian cancer, or breast and colon cancer; or
- Have been diagnosed as having a known cancer susceptibility gene;
we invite you to contact us for more information about the Registry and its programs.
Why would someone want to join the Registry?
Joining the Registry offers the following benefits:
- Get the latest information about cancer, genes and heredity
- Meet with a genetic counselor for education and counseling on genetic susceptibility testing, and whether such testing might be right for you or a family member
- Hear about special studies for which you may be eligible
- Your information can help doctors and scientists learn more about how and why people get cancer, and how it can be treated.
What about my privacy?
Keeping your information private and confidential is the highest priority of our Registry. Although some of the information you provide can be shared with scientists and other researchers, your name or any other identifying information will never be released without your permission.
To further help us protect your privacy, the Registry has obtained a Confidentiality Certificate from the Department of Health and Human Services. With this Certificate, the Registry cannot be forced (for example, by court subpoena) to disclose information that may identify you in any federal, state, or local civil criminal, administrative, legislative, or other proceeding.
If I join the Registry, what will I be asked to do?
- You will be asked to provide information regarding your
- family history;
- background information such as your ethnicity, profession, and level of education;
- personal medical and psychosocial history
- health status;
- You may be asked to provide a blood sample (and tissue sample, if applicable) for storage for possible future studies;
- You will be contacted periodically to update your Registry information such as address, telephone number, and any changes in family or personal medical history;
- You may be contacted by the Registry and informed of research studies that you may be eligible to participate in.
Remember! If you choose to join the Registry, your participation in any or all of the Registry procedures is completely voluntary. Plus, you can withdraw from the Registry at any time
Does the UCLA Family Registry offer genetic testing for susceptibility to cancer?
Yes, eligible Registry participants with a strong family history of cancer will have the opportunity to discuss cancer genetic susceptibility testing with a genetic counselor.
What is Genetic Testing?
Some kinds of cancer, such as breast, ovarian, colon, and uterine cancer, seem to run in families. Only a small portion of cancer is inherited, where an altered gene is passed on from one generation to the next. For certain cancers, genetic tests may be available to identify those who carry these specific alterations. There are many pros and cons to cancer genetic susceptibility testing. The decision to be tested remains complex and personal. Any individual considering genetic testing for these cancer genes should have comprehensive genetic counseling about the limitations, risks and benefits of testing. For current and reliable information about genetic testing for cancer predisposition genes, please go to the website for the National Cancer Institute.
Where can I get more information about joining the UCLA Family Cancer Registry?
For more information about The UCLA Familial Cancer Registry and Genetic Evaluation Program, please call Joyce Seldon, MS, CGC at (310) 794-7576
