Familial Cancer Registry
Director: Claudine Isaacs, MD
Telephone: (202) 444-3677
Lombardi Podium level
Manager: Elizabeth Poggi
Telephone: (202) 687-8070
Harris Building Suite 4100
3300 Whitehaven St, NW
Washington, DC 20057 Description
The Familial Cancer Registry (FCR) Shared Resource provides investigators access to one of the nation's largest collections of individuals from high-risk breast cancer families. The majority of FCR subjects has undergone BRCA1/2 testing and can, therefore, be genetically characterized. The FCR has also begun to recruit participants with hereditary predisposition to colorectal cancer. The FCR is a unique resource that provides comprehensive data on these high-risk individuals including personal medical history, verified family history, detailed epidemiological data, pathology reports and pertinent medical records. It also provides investigators with access to EBV transformed cell lines, extracted DNA, archived tissue samples (malignant and benign) and the ability to acquire fresh tissue from pertinent surgeries. BRCA1/2 testing results can be linked to data and biospecimens. FCR subjects are tracked indefinitely, and subjects are contacted on an annual basis on the anniversary of their enrollment to update information. Since the FCR maintains regular contact with its subjects, the option to collect additional questionnaire data and, in certain circumstances, additional biological specimens, is also available. The annual follow-up process could provide interested investigators with the opportunity to recruit for a peer-reviewed study of novel cancer screening and prevention strategies.
As of Spring 2009, the FCR has over 2200 participants including 478 participants who have tested positive for a BRCA1 or BRCA2 mutation. 1256 FCR participants have been affected with breast or ovarian cancer. The age range of living participants is 19 to 97 years of age and the average age of FCR participants is about 55. Full data sets are available from the FCR on women who test negative for a known familial mutation as well as women who test negative after full BRCA1/2 testing in addition to data on BRCA1/2 mutation carriers. If any of these groups do not suffice for a control group, then the FCR is able to provide sufficient demographic information on cases so that an appropriate control group can be found using another source, such as the Clinical and Molecular Epidemiology Shared Resource (CMESR).Acknowledgements
In all publications that include data derived or methods used from the Familial Cancer Registry, please acknowledge our resource. The Familial Cancer Registry is partially supported by NIH/NCI grant P30-CA051008.