Familial Cancer Registry

Contact Information

Director: Claudine Isaacs, MD
Manager: Grace Zawistowski, BA
(202) 687-8070 (phone)
(202) 687-5676 (fax)
GZ22@georgetown.edu

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 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 all biospecimens. FCR subjects are tracked indefinitely, and subjects are contacted on an annual basis 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.

Services

EBV transformed cell lines: Blood samples from FCR subjects are transformed into cell lines using the Epstein-Barr Virus at the Tissue Culture Shared Resource, thereby providing an unlimited amount of DNA for research. Cell lines can be linked to BRCA1/2 test results, epidemiological data, medical history information, family history information, and often tumor and/or non-tumor tissue.
Extracted DNA: A limited amount of extracted DNA is available for FCR subjects. Extracted DNA can be linked to BRCA1/2 test results, epidemiological data, medical history information, family history information, and often tumor and/or non-tumor tissue. Subjects for whom extracted DNA is not available may have cell lines available through the FCR from which DNA can be extracted.
Archived tissue (tumor and non-tumor): Tissue blocks from surgeries performed on FCR subjects at Georgetown University Hospital are stored at the Histopathology and Tissue Shared Resource (HTSR) in an area set aside for FCR blocks. A limited number of tissue blocks are also available for surgeries performed at external institutions. In some cases, FCR tissue blocks can be cut according to the requesting investigator's specifications. In addition, the FCR has one H&E stained slide and 24 unstained slides of 5 microns each for surgeries performed at external institutions and for whom tissue blocks were not available. Tissue can be linked to cell lines, extracted DNA, BRCA1/2 test results, epidemiological data, medical history information, and family history information.
Fresh tissue (tumor and non-tumor): Since only the FCR staff knows the identity of its subjects, the staff notifies interested investigators of the opportunity to procure fresh tissue samples from its high-risk population have surgery at Georgetown University Hospital. The FCR works closely with the Histopathology and Tissue Shared Resource to retrieve the tissue sample from the operating room or from the Pathology Department while maintaining the confidentiality of the FCR subject. Tissue can be linked to cell lines, extracted DNA, BRCA1/2 test results, epidemiological data, medical history information, and family history information.
Epidemiological data: Questionnaire data is available for FCR participants with information pertaining to general health, medical conditions and procedures, alcohol consumption, exposure history, and reproductive health history. In addition, pedigrees detailing the family history of cancer are available for FCR subjects. Epidemiological data from FCR subjects can be linked to cell lines, extracted DNA, BRCA1/2 test results, and medical and family history information.

Eligibility

The resources of the FCR are available to Lombardi Comprehensive Cancer Center investigators and to non-Lombardi investigators provided the resources will be used for cancer research. Requests will be considered for both funded and unfunded research.

Procedures

Investigators wishing to use FCR services must complete a Request Form and must also sign a Data/Specimen Use Agreement after reviewing the FCR consent form (please contact the Manager for forms). Both the Request Form and Data/Specimen Use Agreement must include an original signature, and can be faxed to the FCR Manager at 202-687-5676.

All requests must be approved by the FCR Director. If an investigator requests non-renewable resources (i.e. tissue) then the request must be approved by the Tissue Review Committee, and additional information may be requested from the investigator in preparation for the review. Additionally, requests for modifications and/or additions to FCR data collection instruments may require the approval of the FCR Advisory Committee.

Investigators are encouraged to contact either the FCR Director or the FCR Manager prior to submitting a formal request to ensure that the data and/or specimens that the investigator needs are available through the FCR.

Personnel

Claudine Isaacs, Director

Grace Zawistowski, Manager
(202) 687-8070
GZ22@georgetown.edu

Fees

$25 per sample for DNA
$25 per sample for cell lines (may cost more depending on the type of preparation required)
$ 5 per sample for minimal data linked to DNA samples and/or cell lines
$75 per hour for data sets
Tissue costs will be calculated on a case by case basis, depending on investigator specifications.

Acknowledgements

Publications and/or grants arising from research projects using FCR specimens and/or data must acknowledge this support by stating that "samples and/or data were provided by the Familial Cancer Registry Shared Resource of Lombardi Comprehensive Cancer Center."