) Our overall goal is to establish a regional cancer genetics network in the Mid-Atlantic region (encompassing Maryland, Delaware, and the District of Columbia) and additional participating institutions that, along with our existing and strong cancer-related resources and facilities, can contribute to the goals of the overall Cancer Genetics Network (CGN) in order to promote cancer genetics research, education, and clinical services, both locally and nationally. Johns Hopkins is uniquely positioned by its multidisciplinary leadership in cancer genetics research, clinical programs, and genetics and public policy/ethics studies to readily develop an integrated network.
Our specific aims i nclude: 1) To construct a Mid-Atlantic Cancer Genetics Network (MACGN), which through consortial arrangements, will function as an actively participating center of the national CGN. 1a) We will establish an organizational structure composed of a central Steering Committee, the participating regional institutions, and support personnel for the research, educational, and local informatics activities, all linked by secure Internet access. lb) We will develop and coordinate referrals of high risk patients and families (by regional institutions and existing research studies/registries) to established clinical programs in predictive cancer genetic testing to further expand cancer genetic services in the region and support the activities of the national CGN. 2) To facilitate cancer genetics research within the CGN. 2a) We will establish an appropriate local program structure to assist investigators interested in cancer genetics research. This program will be directed by the MACGN Steering Committee and will organize and track ongoing research activities both locally and within the CGN, exploit local collateral research strengths in cancer research, provide expertise to formulate new hypotheses, and coordinate mechanisms for the funding of promising studies. 2b) We will develop and maintain a local registry resource of selected high risk patients and families eligible for research protocols of the CGN. This MACGN resource will recruit patients into the national CGN registry, compile core clinical, family, and epidemiologic data, and collect and store biological specimens as needed for specific CGN studies. 3) To coordinate and promote cancer genetics educational opportunities in the Mid-Atlantic region. 3a) We will establish a local program to coordinate new and existing community and patient cancer genetics educational resources, including the development of Internet-based information. 3b) Through collaboration with other CGN participating centers, we will adapt nationally developed cancer genetics curricula and devise educational materials appropriate for health professionals in the Mid-Atlantic region and broader geographic areas covered by CGN centers. 3c) We will disseminate the locally- and CGN-developed cancer genetics curriculum and informational updates to the Mid-Atlantic region through academic courses (both traditional and distance learning modes), CME courses, a speakers bureau, and electronic newsletters. Thus, the Johns Hopkins team will provide the leadership to integrate its multifaceted strengths in basic research, clinical research, informatics expertise, genetic policy studies, and health, education to form a center that will both serve and draw from its regional clinic population, and function in the national Cancer Genetics Network.
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