COOPERATIVE FAMILY REGISTRY FOR BREAST CANCER STUDY

描述：（申请人的描述） CFRBCS成立于1995年，旨在促进合作努力， 个人流行病学和跨学科研究的资源， 患乳腺癌的风险很高。六个参与机构已设立一个 强大的研究基础设施已成为家庭研究的典范。 一系列由各场址代表组成的工作组已将 流行病学和家族史调查工具，制定统一的 数据收集和管理、组织收集、处理 质量控制和分配，建立了同行审查机制， 建议的研究，并通过了共同的语言的设计和方法， 知情同意。结果，5,500多个家庭有一系列的家族性疾病， 乳腺癌和卵巢癌的风险已经招募，33项研究使用 CFRBCS的资源已获得批准。CFRBCS有很多优点， 包括其对处于危险中的家庭的关注， 以人口和临床为基础的人口，对数据质量的关注， 以及六位专家在乳腺癌方面的广泛专业知识， 参与网站CFRBCS现在将注意力转向维护和 扩大这一资源，以开展一项雄心勃勃的 创造性的研究议程，将进行乳腺癌研究领域 进入新千年本核心单元的具体目标是：1） 完全招募已知突变状态的家族（阳性或阴性）， 或阴性）以支持新基因发现、基因/环境和基因/基因 2）扩大少数民族和德系犹太人家庭的招募， 基因研究和心理社会研究; 3）继续病理学采集 和病理学审查，以支持临床/病理学研究， 收集肿瘤组织块，包括所有肿瘤类型，用于新基因发现 研究; 4）继续淋巴细胞的转化和永生化： 5)管理后续调查问卷并将其输入数据库; 6） 维护一个正常运行的数据库、生物标本库和分发 能力;以及7）参与竞争性研究模块 UO 1更新。

DESCRIPTION: (Applicant's Description) The CFRBCS was established in 1995 to stimulate cooperative efforts to provide a resource for epidemiologic and interdisciplinary studies of individuals at high risk for breast cancer. The six participating institutions have created a powerful research infrastructure which has become a model for family studies. A series of working groups with representation from each site has standardized epidemiologic and family history survey instruments, developed uniform procedures for data collection and management, tissue collection, processing, quality control and distribution, established a mechanism of peer review for proposed studies, and adopted common language for the design and approach to informed consent. As a result, over 5,500 families with a spectrum of familial risk for breast and ovarian cancer have been recruited and 33 studies using the resources of the CFRBCS have been approved. The CFRBCS has many strengths, including its focus on the family at risk, representation from both population- and clinic-based populations, its attention to quality of data, and the broad base of expertise in breast cancer represented among the six participating sites. The CFRBCS now turns its attention to the maintenance and expansion of this resource for the purpose of carrying out an ambitious and creative research agenda which will carry the field of breast cancer research into the new millenium. The specific aims of this Core Module are: 1) to complete recruitment of families with known mutation status (either positive or negative) to support new gene discovery, gene/environment and gene/gene studies; 2) to extend minority and Ashkenazi Jewish family recruitment for gene studies and psychosocial studies; 3) to continue pathology acquisition and pathology review to support clinical/pathology studies, to expand collection of tumor blocks to include all tumor types for new gene discovery studies; 4) to continue the transformation and immortalization of lymphocytes: 5) to administer and enter follow-up questionnaires into the database; 6) to maintain a functioning database, biospecimen repository, and distribution capability; and 7) to participate in the research modules for the competitive UO1 renewal.