Cancer Genetics Network:

Ready for Research

By, Linda Anderson, MPA

The Cancer Genetics Network (CGN), marks its second anniversary this year and is on its way to becoming a national resource for investigations on the inherited predisposition of cancer.

The Network consists of 8 core U.S. centers (with affiliated subsites and informatics groups) that are inviting individuals at high risk of cancer because of personal history to join as potential participants in studies.The individuals provide general information on themselves and their personal and family medical histories, which is entered into a central database operated by an informatics group.

When the CGN is fully developed, investigators will be able to apply to have individuals who fit their study requirements queried about participation in important research. In this way, the Network will support studies that might not be possible in a single institution and will speed research by shortening recruitment time.

As the Network's population and database grow, it will be able to support an ever increasing array of collaborative investigations.These studies will advance understanding of the genetic basis of cancer susceptibility, mechanisms to integrate this new knowledge into medical practice, and means of confronting the associated psychosocial, ethical, legal, and public health issues.The Network is also key to advancing the extraordinary opportunity for research on genes and the environment, as well as opportunities for research on cancer communications.

Dr. Richard Klausner, NCI Director, sees the Network as an important vehicle for conducting studies that provide much-needed clinical information to help individuals who are potentially predisposed to cancer, or who are at high risk for cancer, because of familial or known genetic predisposition."Five years from now, I'd like to see the CGN be a place that really brings together the full range of disciplinary talents and knowledge that allow us to do clinical intervention studies,'' said Klausner at the CGN Steering Committee's meeting this summer. He stressed the need for translational research that brings findings from basic research to the development of interventions for people that will prevent and reduce risk for cancer, and improve early detection and treatment.

Presently, the CGN participating sites are conducting pilot projects that are consistent with the Network's current size and provide opportunities to test the Network's ability to function effectively.About 2,000 individuals and 30,000 family members are now part of the Network, and the numbers are rapidly increasing.The pilot projects include searching for novel colon cancer susceptibility loci among sibling pairs who have a history of colon cancer, and investigating genetic and environmental modifiers in BRCA 1 and 2 mutation carriers.Researchers are also obtaining, characterizing, and documenting biological specimens from a population-based series of families who have a history of onset of prostate cancer at an early age.

"Many people have questions and concerns about the significance of a family history of cancer," said Dr. James Hanson, acting chief, Clinical and Genetic Epidemiology Research Branch (CGERB)."They can help us answer such questions by considering participation in the Network." Information about contacting the participating centers is available through the Network's Web site: http://dccps.nci.nih.gov/CGN. Or individuals may call NCI's Cancer Information Service, 1-800-4-CANCER (1-800-422-6237); TTY: 1-800-332-8615.

In these first years, the CGN has concentrated on development of its infrastructure. Working groups are addressing issues important to ensure that the Network is effectively used to support translational, behavioral science, and education and communication research. Groups are also tackling issues important for uniform collection of family history data, informed consent, population ascertainment, and model validation. Strong emphasis is placed on developing best practices for informed consent and ensuring protection of the confidentiality of study participants. Data security is of paramount importance, and the data are protected by the latest safeguards in informatics.

In time, the Network will expand through partnerships with other institutions. It might work, for example, with the NCI-funded Specialized Programs of Research Excellence (SPOREs), which promote translational research on specific types of cancer; the NCI Clinical Trials Cooperative Group Program; or the trans-NIH Mouse Models of Human Cancer Consortium. The Network is giving attention to establishing policies and procedures that are consistent with other groups in order to enhance opportunities for collaboration, and to help maximize use of NCI's research resources to study cancer genetics. Funding for any research activities will come largely from traditional grant mechanisms.

The principal investigators and institutions are: Dr. Joellen Schildkraut, Duke University Medical Center, Durham, N.C.; Dr. John Potter, Fred Hutchinson Cancer Research Center, Seattle, Wash.; Dr. Claudine Isaacs, Georgetown University Lombardi Cancer Center, Washington, D.C., Dr. Constance Griffin, Johns Hopkins University, Baltimore, Md.; Dr. Hoda Anton-Culver, University of California, Irvine (UCI); Dr. Barbara Weber, University of Pennsylvania, Philadelphia, Pa.; Dr. Louise Strong, University of Texas M.D. Anderson Cancer Center, Houston; and Dr. Geri Mineau, University of Utah, Salt Lake City.

Three institutions form the Informatics and Information Technology Group, which meets the Network's information exchange and data management and statistical needs. The principal investigators and institutions are: Dr. Anton-Culver, UCI; Dr. Dianne Finkelstein, Massachusetts General Hospital, Boston, and Dr. Prakash Nadkarni, Yale University, New Haven, Conn.

Linda Anderson is the Director of Communications, Epidemiology and Genetics Research Program at the

National Cancer Institute.