Breast Cancer Family Registry Cohort

描述(由申请人提供)：这项UM1申请的目标是维护和加强乳腺癌家庭登记(BCFR)的核心基础设施，这是一个为乳腺癌跨学科合作研究而建立的多代家庭的国际资源。BCFR队列于1995年在6个地点建立，由来自11,900个家庭的34,000人组成，他们提供了关于家族史和流行病风险因素的数据以及生物标本。在接下来的五年里，BCFR调查员团队将继续1)使用通用工具和方案积极跟踪家族队列，更新癌症家族史，以识别家族中的新乳腺癌和其他癌症，并管理后续问卷以更新基线流行病学数据；2)维护广泛的数据和生物标本资源，并通过对自基线以来确定的所有新乳腺癌进行病理学审查，完成肿瘤的分子亚型，以及完成已知乳腺癌易感变异的基因分型来加强这些资源；3)收集有关筛查、降低风险和预防健康行为的新数据、遗传疾病的知识，以及基因检测和与家庭成员沟通的新数据，以便将研究结果转化为临床实践；以及4)继续 并通过共享BCFR数据和生物标本资源扩大与外部研究人员的合作，这些研究涉及基因发现、癌症相关结果、高危个体的风险因素、行为干预以及高危家庭成员的癌症预防试验等一系列研究。BCFR队列研究的独特之处在于，它是以家庭为基础的，也是第一项针对处于风险连续体的女性的乳腺癌风险的大型前瞻性研究。除了未受影响的队列外，BCFR还拥有受影响最大的队列之一，因此将为复发、二次初发和存活率的翻译和临床研究提供强大的资源。

DESCRIPTION (provided by applicant): The objective of this UM1 application is to maintain and enhance the core infrastructure of the Breast Cancer Family Registry (BCFR), an international resource of multi-generational families established for interdisciplinary collaboratie research on breast cancer. The BCFR Cohort, established in 1995 at 6 sites is comprised of 34,000 individuals from 11,900 families who provided data on family history and epidemiologic risk factors as well as bio specimens. Over the next five years, the BCFR investigator team will continue 1) to actively follow the family cohort using common instruments and protocols, update the cancer family histories to identify new breast and other cancers in the families, and administer a follow-up questionnaire to update baseline epidemiologic data; 2) to maintain the extensive data and bio specimen resources and enhance them by conducting pathology review for all new breast cancers ascertained since baseline, completing molecular sub typing of tumors, and completing genotyping of known common breast cancer susceptibility variants; 3) to collect new data on screening, uptake of risk reductive and preventive health behaviors, knowledge of genetic disease, and uptake of genetic testing and communication to family members that will facilitate the translation of findings into clinical practice; and 4) to continue and expand collaborations with external investigators by sharing of BCFR data and bio specimen resources for a wide range of studies of gene discovery, cancer-related outcomes, risk factors in high-risk individuals, behavioral interventions and cancer prevention trials among at-risk family members. The BCFR Cohort is unique in that it is family-based and the first large prospective study of breast cancer risk for women at a continuum of risk. In addition to the unaffected cohort, the BCFR has one of the largest affected cohorts and will therefore provide a powerful resource for translational and clinical studies of recurrences, second primaries and survival.