Clinical Cancer Genetics Community Network: A Sustainable Research Partnership

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DESCRIPTION (provided by applicant): With dramatic advances in the understanding of the genetic basis of cancer over the past decade, genetic cancer risk assessment (GCRA) has emerged as a distinct clinical consultative service. GCRA utilizes rapidly evolving genetic technologies along with established empiric risk models to estimate cancer risk and to provide age- and risk-level appropriate cancer prevention and risk-reduction strategies for individuals and their families. Despite clinical studies documenting the efficacy of cancer risk reduction measures in high-risk individuals, there is still very limited access to GCRA services for the underserved, underinsured, and many ethnic minorities. To address this need, the City of Hope (COH) Comprehensive Cancer Center developed a Cancer Screening & Prevention Program Network (CSPPN) to facilitate the delivery of state of the art GCRA services in both local and distant communities. Growth of the CSPPN was enabled by information technology, with videoconferencing for telemedicine and web conferencing for remote participation in multidisciplinary genetics tumor boards. An innovative clinician education program also catalyzed expansion of an affiliated clinical cancer genetics community network (CCGCN), which has accrued >6,000 high risk patients, and scholarly research created in collaboration with community partners in the realms of genetic epidemiology, bio- behavioral research, disparities specific behavioral and epidemiological research, and locally-relevant and practical health services research. However, the growth of the CCGCN, as well as the efficiency, quality and ultimately the utility of the prospective registry data are constrained by significant limitations in the current infrastructure. The overall aim of this application is to expand and enhance the quality and integrity of an established community-based national hereditary cancer research registry network to facilitate and accelerate the pace, productivity, dissemination, and translation of research findings to local practice. This will be accomplished through the following Specific Aims: (1) Reconfigure pedigree-drawing and the relational database to facilitate web-based access for community network participants; (2) Establish procedures for the collaborative administration and use of research registry data and biospecimens; (3) Expand and enhance an established cancer genetics community of practice using Academic Health Center (AHC) resources to generate and sustain the participation of community-based clinicians in the research network and (4) Create common and complimentary research agendas, especially among underserved outreach clinics, to address geographic, socioeconomic, and ethnic disparities in cancer genetics healthcare and research participation. The proposed project will serve to further develop academic-community research partnerships, utilizing the developed collaborative research infrastructure to improve and maximize communication among the research community, and more effectively disseminate locally-relevant research findings. PUBLIC HEALTH RELEVANCE: The proposed clinical cancer genetics community network project will serve to further develop academic-community research partnerships, utilizing the developed collaborative research infrastructure to improve and maximize communication among the research communities and more effectively facilitate and initiate community-based research, as well as disseminate locally-relevant research findings.