NORTHERN CALIFORNIA COOPERATIVE FAMILY REGISTRY

北加州合作家族登记处

• 批准号: 2113489
• 负责人: DEE WAYNE WEST
• 金额: $ 16.07万
• 依托单位: CANCER PREVENTION INSTIT OF CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 1995
• 资助国家: 美国
• 起止时间: 1995-09-30 至 1999-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2113489
• 关键词: blood chemistry; brca gene; breast neoplasms; cancer registry /resource; cancer risk; cooperative study; data collection; disease carrier state; early diagnosis; ethics; family genetics; gene mutation; histopathology; hormone receptor; human subject; neoplasm /cancer epidemiology; neoplasm /cancer genetics; ovary neoplasms; pediatric neoplasm /cancer; preneoplastic state; questionnaires; tissue resource /registry; tumor suppressor genes

This project proposes to establish a Family Registry for Breast Cancer (FRBC) as part of an NCl-funded cooperative registry. The FRBC will be population-based (in the Greater San Francisco Bay Area), include many racial/ethnic minorities, and use a cost-efficient design to: 1) collect pedigree information, epidemiologic data, and biologic specimens from breast cancer cases with a family history of breast, ovarian, and/or childhood cancers; 2) identify a population at high-risk for breast cancer that could be examined for inherited BRCA1 and p53 mutations, and facilitate cloning and analysis of other susceptibility genes; and 3) identify and obtain biologic specimens from Greater Bay Area families with Li-Fraumeni syndrome and a select subset of Dr. Li's established Li- Fraumeni families to broaden the resource for characterizing genetic susceptibility to breast cancer. Data included in the FRBC will be available to approved investigators to further genetic and translational research for breast cancer. Cases included in the FRBC will be identified by the Northern California Cancer Center's (NCCC) population-based Greater Bay Area Cancer Registry (GBACR), which covers six million residents. During a 3-year ascertainment period, 8047 female cases (< age 65) and 78 male cases (< age 80), diagnosed from 1/1/95 through 12/31/97, will be identified. Cases will be asked to complete a brief screening questionnaire about their family history of cancer. Based on the reported cancer patterns of breast, ovarian and childhood cancers in their families, we will classify cases as "exceptional," "ordinary," or "sporadic" probands. "Exceptional" and a sample of "ordinary" probands (n=875), the groups reporting positive family histories, will be sent a family pedigree and a brief risk-factor questionnaire. A race-stratified sample of "exceptional" and "ordinary" probands who complete the questionnaires (N = 424) will be asked to provide a blood sample and access to archived tissue. Affected relatives of probands from these high- risk families whose diagnoses have been verified by review of pathology and medical records will be asked to complete a family pedigree, donate blood, and provide access to archived tissue (N = 648). Blood collected as part of the FRBC will be processed and stored at NCCC. Archived tissue will be prepared for storage by a Co-Investigator at Stanford University. With the proposed sampling strategy, racial/ethnic minorities will comprise one-half of the high-risk probands and affected family members. Cases will be followed using GBACR methods to obtain survival and recurrence data. Genetic counseling will be provided as needed using trained oncology nurse/genetic counselor pairs and existing community resources. An Operations Core will track all aspects of the project, record pedigrees, and make FRBC data accessible electronically; this unit also will conduct quality-control measures at all steps of data collection. Four pilot studies using the FRBC are proposed. FRBC Investigators will serve on NCl's Steering Committee and develop common policies for quality and distribution of data from the FRBC.

该项目建议建立乳腺癌的家庭注册表 （FRBC）作为NCL资助的合作注册表的一部分。 FRBC将是 基于人口的（在旧金山湾区更大），包括许多 种族/族裔少数民族，并使用成本效益的设计来：1）收集 谱系信息，流行病学数据和生物标本 具有乳房，卵巢和/或家族史的乳腺癌病例 童年癌； 2）确定乳腺癌高风险的人群 可以检查遗传的BRCA1和p53突变，以及 促进克隆和分析其他易感基因； 3） 从大湾地区的家庭中识别并获得生物标本 Li-Fraumeni综合征和Li博士已建立的Li-的精选子集 Fraumeni家族扩大了表征遗传的资源 对乳腺癌的敏感性。 FRBC中包含的数据将是 可供批准的研究人员进一步遗传和转化 研究乳腺癌。将确定FRBC中包含的案例 由北加州癌症中心（NCCC）基于人群的更大 湾区癌症登记处（GBACR），占600万居民。 在3年的确定期内，8047例女性病例（<65岁）和78例 男性病例（<80岁），从1/1/95至12/31/97诊断为 确定。案件将被要求完成简短的筛选 有关他们的癌症家族史的问卷。根据报道 乳腺癌，卵巢和儿童期癌症的癌症模式 家庭，我们将将案件归类为“特殊”，“普通”，或 “零星”概率。 “异常”和“普通”概率的样本 （n = 875），报告积极家庭历史的小组将被发送 家庭谱系和简短的风险因素问卷。 种族分层 完成“杰出”和“普通”的样本 问卷（n = 424）将被要求提供血液样本和 进入存档的组织。这些高概率的亲戚 风险家庭的诊断已通过病理审查验证 并将要求医疗记录完成家庭谱系，捐赠 血液，并提供进入存档的组织（n = 648）。血液收集为 FRBC的一部分将被处理并存储在NCCC。存档的组织 将准备由斯坦福大学的共同研究人员存储。 通过提出的抽样策略，种族/族裔少数民族将 包括高风险的概率和受影响的家庭成员的一半。 将使用GBACR方法遵循案件，以获得生存和 复发数据。 遗传咨询将根据需要提供 训练有素的肿瘤护士/遗传辅导员和现有社区 资源。操作核心将跟踪项目的各个方面， 记录血统，并以电子方式访问FRBC数据；这个单元 同样将在数据的所有步骤中进行质量控制措施 收藏。提出了使用FRBC的四个试点研究。 FRBC调查人员将在NCL指导委员会任职并发展 从FRBC质量和分配数据的常见政策。