It's Official!

The Mid-Atlantic Cancer Genetics Network (MACGN) has been established at the Johns Hopkins University. Last summer, the National Cancer Institute (NCI) launched a major research initiative to create a national network of centers that specialize in the study of the genetic susceptibility to cancer. In August 1998, NCI awarded grants to eight institutions, including Johns Hopkins University, to establish this network, named the Cancer Genetics Network. The network will serve as a major national resource to promote cancer genetics research, translate research findings into medical practice, and address the associated psychosocial, ethical, legal, and public health issues.

The Cancer Genetics Network builds on the recent identification of genes linked to inherited cancers and will help researchers answer the many clinical questions related to the hereditary susceptibility to cancer. Issues to be explored include: the prevalence of germline (inheritable) mutations of familial cancer genes in different populations, the determinants of cancer development in individuals with inherited genetic mutations, environmental exposures that interact with genes to cause cancer, and the translation of findings into cancer prevention strategies.

An Informatics and Information Technology group will meet the network's information exchange, data management, and statistical analysis needs. The University of California, Irvine, will develop and maintain the central data management system, provide education and technical data management support for network centers, and develop information systems that facilitate the exchange of information and resources within the larger cancer genetics community. Massachusetts General Hospital will assist investigators in designing studies. Yale University will manage data collection for studies, including data coordination, quality control, statistical reporting, and provision of biostatistics expertise.

The Cancer Genetics Network may be the largest virtual collaboration dedicated to the study of cancer genetics. The network will invite people at high risk of cancer due to personal or family history to join a registry, or list, of potential study participants. Individuals will receive practical information on cancer genetics and new developments in the field. Participants' information will be kept confidential and safeguarded by the latest informatics technology.

When studies are initiated, a pool of interested individuals will be available 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 enough study participants to answer important questions definitively. The network will also support pilot studies on cancer genetics and foster collaborative research among the participating centers and with researchers outside the network. The network will also facilitate the exchange of information on cancer genetics and research resources within the larger cancer and cancer genetics communities.

The aim is to encourage optimal use of this national resource. The other institutions that received awards are: Duke University Medical Center, Fred Hutchinson Cancer Center, Georgetown University Lombardi Cancer Center, University of California, Irvine, University of Pennsylvania, University of Texas M. D. Anderson Cancer Center, and the University of Utah, Salt Lake City.

As part of the Cancer Genetics Network, the Mid-Atlantic Cancer Genetics Network (MACGN) is working with physicians from across the mid-Atlantic region. In addition to the research efforts, MACGN sponsors patient and professional education via the Internet, a speakers' bureau, continuing medical education, and this newsletter. To learn more about MACGN, please call Estella Chen, Ph.D., Project Coordinator, at (410) 614-6334.

Members of the Mid-Atlantic Cancer Genetics Network, from left to right: Constance Griffin, Karen Johnson, Kathy Helzlsouer, and Gloria Petersen.