Clinical Cancer Genetics Community Network: A Sustainable Research Partnership

描述(由申请人提供)：在过去的十年里，随着对癌症遗传基础的理解取得了巨大的进步，遗传性癌症风险评估(GCRA)已经成为一项独特的临床咨询服务。GCRA利用快速发展的基因技术以及已建立的经验风险模型来评估癌症风险，并为个人及其家庭提供与年龄和风险水平相适应的癌症预防和降低风险策略。尽管临床研究记录了降低癌症风险措施在高危人群中的有效性，但服务不足、保险不足和许多少数民族获得GCRA服务的机会仍然非常有限。为了满足这一需求，希望之城(COH)综合癌症中心开发了一个癌症筛查和预防计划网络(CSPPN)，以促进在当地和偏远社区提供最先进的GCRA服务。CSPPN的增长是由信息技术推动的，远程医疗的视频会议和远程参与多学科遗传学肿瘤委员会的网络会议。创新的临床医生教育计划还促进了附属临床癌症遗传学社区网络(CCGCN)的扩大，该网络已积累了6,000名高危患者，并与社区合作伙伴在遗传流行病学、生物行为研究、差异特定行为和流行病学研究以及与当地相关和实用的卫生服务研究领域合作创建了学术研究。然而，CCGCN的增长以及预期登记册数据的效率、质量和最终用途受到当前基础设施的重大限制。这项应用的总体目标是扩大和提高已建立的以社区为基础的国家遗传性癌症研究登记网络的质量和完整性，以促进和加快研究成果转化为当地实践的步伐、生产力、传播和转化。这将通过以下具体目标实现：(1)重新配置谱系绘制和关系数据库，以促进社区网络参与者的基于网络的访问；(2)为研究登记数据和生物样本的协作管理和使用建立程序；(3)利用学术卫生中心(AHC)资源扩大和加强已建立的癌症遗传学实践社区，以产生和维持社区临床医生对研究网络的参与；(4)创建共同的和免费的研究议程，特别是在服务不足的外展诊所中，以解决在癌症遗传学保健和研究参与方面的地理、社会经济和种族差异。拟议的项目将有助于进一步发展学术界和学术界的研究伙伴关系，利用已开发的协作研究基础设施，改善和最大限度地加强研究界之间的交流，并更有效地传播与当地有关的研究成果。 公共卫生相关性：拟议的临床癌症遗传学社区网络项目将有助于进一步发展学术-社区研究伙伴关系，利用开发的协作研究基础设施来改善和最大限度地加强研究界之间的沟通，更有效地促进和启动基于社区的研究，以及传播与当地相关的研究成果。

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.