Network Launched to Support Studies of Genetic Susceptibility to Cancer

For the first year of these five-year awards, NCI is providing $5.8 million in total costs for the network and $1.28 million in total costs for the Informatics and Information Technology Group.

"The new network, which builds on the recent progress in isolating genes linked to inherited cancers, will allow us to attempt to answer the many clinical questions that these discoveries raise," said Richard D. Klausner, M.D., NCI director. The network will be a major national resource to support collaborative investigations into the genetic basis of cancer susceptibility, explore mechanisms to integrate this new knowledge into medical practice, and identify means of addressing the associated psychosocial, ethical, legal, and public health issues. "This new research infrastructure will position us to better capitalize on the remarkable advances taking place in understanding hereditary susceptibility to cancer," said Klausner.

Some of the wide-ranging scientific issues to be explored as a part of the initiative include: What is the prevalence of germline (heritable) mutations of familial cancer susceptibility genes in different populations? What determines whether someone with such an inherited genetic alteration gets cancer? What environmental exposures may interact with susceptibility genes to cause cancer? How can genetic discoveries be translated into cancer prevention strategies for susceptible individuals, and into more effective treatments? What ethical and psychosocial issues affect healthy individuals and their families who may carry cancer susceptibility gene mutations?

The institutions receiving the network awards and principal investigators are:

Duke University Medical Center, Durham, N.C.

J. Dirk Iglehart, M.D.

Fred Hutchinson Cancer Center, Seattle

John D. Potter, M.D., Ph.D.

Georgetown University Lombardi Cancer Center,

Washington, D.C.

Caryn E. Lerman, Ph.D.

Johns Hopkins University, Baltimore

Gloria M. Petersen, Ph.D.

University of California, Irvine

Hoda Anton-Culver, Ph.D.

University of Pennsylvania, Philadelphia

Barbara Weber, M.D.

University of Texas M. D. Anderson Cancer Center,

Houston

Louise C. Strong, M.D.

University of Utah, Salt Lake City

Raymond L. White, Ph.D.

The Informatics and Information Technology Group will meet the networks information exchange and data management and statistical needs. The University of California, Irvine, Calif., with Anton-Culver as principal investigator, will develop and maintain the central data management system, including the network registry; provide appropriate education and technical data management support for network centers; and develop information systems that facilitate the exchange of genetics information and resources within the larger cancer genetics community. Massachusetts General Hospital, Boston, with Dianne M. Finkelstein, Ph.D., as principal investigator, will advise and assist investigators in designing studies. Yale University, New Haven, Conn., with Prakash M. Nadkarni, Ph.D., as principal investigator, will manage data collection for studies, including data coordination, quality control, statistical reporting, and provision of biostatistics expertise.

"The multi-center and interdisciplinary collaborative structure of the network will enable the participating centers to draw upon each other, and to have access to research resources, information, and expertise beyond the scope of any single institution," said Barbara K. Rimer, Dr.P.H., director of NCI's Division of Cancer Control and Population Sciences (DCCPS), within whose division the network is managed. "The result will be perhaps the largest virtual collaboratory dedicated to the study of cancer genetics. By being able to draw on a large pool of potential study participants, it will be possible to have sufficient information available that may be important for specific studies, such as on gene penetrance, family history of cancer, medical information that is relevant to susceptibility, decision making about testing, and environmental and occupational exposures."

Up to 18 months will be spent planning and setting up the infrastructure to support the project. The network will invite people at high risk of cancer due to family or personal history to add their names on a roster of potential study participants. These individuals will periodically receive practical information on cancer genetics and new developments in the field. Genetic testing and biospecimen collection will not be part of enrollment in the network, but are likely to be part of participation in a study. Participation in the network, and in any studies conducted through it, will be confidential, and all individuals will be protected by the latest in informatics safeguards.

When studies are initiated, a pool of interested and knowledgeable individuals will be preassembled and can readily be invited to participate. This approach will speed the research process, and the pooling of volunteers from the eight network centers will make it possible to have sufficient numbers of study participants to answer important questions definitively. A small pilot study may be able to recruit volunteers from a single participating center, but for the most part, the researchers envision needing to recruit from several centers, or possibly from the entire network.

The network will also facilitate the exchange of information on cancer genetics and research resources within the larger cancer and cancer genetics communities. Mechanisms will be developed to provide broad access to information about genetic services and educational materials for use by researchers, health care professionals, and the public.

With NCI funding, the network will also support pilot studies on cancer genetics, and will foster collaborative research among the participating centers and between them and researchers outside the network. The aim is to encourage optimal use of this potential national resource.

A steering committee will be established to review and approve all proposed studies. Other than network-sponsored pilot studies, research costs, including for genetic testing, counseling, biospecimen collection and storage, and data processing, will be funded by the individual research applicant.

NCI also hopes in the future to expand the network to include additional institutions and/or locations.

After the Cancer Genetics Network is launched, interested individuals will be able to contact the NCI's Cancer Information Service (CIS), 1-800-4-CANCER (TTY equipment: 1-800-332-8615), to learn about opportunities to participate.

FOR RESPONSE TO INQUIRIES: NCI Press Office / (301) 496-6641

Message posted by: Frank S. Zollmann