NCI Press Office
Participation in the network and its accompanying Informatics and Information Technology infrastructure will be through cooperative agreements with research institutions that submitted proposals in 1997, and competed for funding through the National Institutes of Health peer-review process.
"The Cancer Genetics Network will develop scientific resources and provide access to study populations not currently available to most individual cancer genetics programs," said Richard D. Klausner, M.D., NCI director. "This new research infrastructure will position us to capitalize on the remarkable advances taking place in understanding hereditary susceptibility to cancer."
An Informatics and Information Technology Group will meet the network's information exchange and data management and statistical needs. Informatics support will be provided to develop and maintain the central data management system, provide appropriate education and technical data management support for network institutions, and develop information systems that facilitate the exchange of genetics information and resources within the larger cancer genetics community. The group will also manage data collection for studies, including data coordination, quality control, statistical reporting, and provision of biostatistics expertise. In addition, the group will create security safeguards to protect the privacy of every participant.
"The aim is to create a multi-center and interdisciplinary collaborative structure that will enable the participating institutions 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 will be managed." The result will be perhaps the largest virtual collaboratory dedicated to the study of cancer genetics.
The network will enhance pursuit of pressing questions, with great scientific and clinical relevance. These include: What is the prevalence of germline (heritable) mutations of familial cancer susceptibility genes in different populations? 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?
After the cooperative agreements are awarded, the Cancer Genetics Network and the Informatics and Information Technology Group will spend their first year planning and setting up the complex infrastructure required to support the project. Then, the network will begin to invite individuals who are at high risk of cancer because of family or personal history and who are interested in participating in cancer genetics studies, to be placed 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 required for enrollment in the network, but are likely to be part of participation in studies. Participation in the network, and in any studies conducted through it, will be confidential, and all individuals will be protected by the latest in privacy 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 individual network institutions will make it possible to have sufficient numbers of study participants to answer important questions definitively.
The network also will 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. Additionally, NCI funding for the network will support pilot studies on cancer genetics, and will foster collaborative research among the participating institutions, and between them and researchers outside the network. The aim is to encourage optimal use of this unique 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 separate grants to individual research applicants.
After the Cancer Genetics Network is launched, interested individuals will be able to contact the NCI's Cancer Information Service, 1-800-4-CANCER (TTY equipment:
1-800-332-8615), to learn about opportunities to participate.
Scientific Program Coordinators:
Susan G. Nayfield, M.D., M.Sc., and James W. Hanson, M.D.
Division of Cancer Control and Population Sciences
National Cancer Institute
6120 Executive Boulevard, Rm. 214, MSC-7147
Bethesda, MD 20892-7147
(301) 496-9600; fax: (301) 435-5477
E-mail: Dr. Nayfield, firstname.lastname@example.org; Dr. Hanson, email@example.com
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