Breast Cancer Family Registry Cohort

描述（由申请人提供）：此UM1申请的目的是维护和增强乳腺癌家庭登记处（BCFR）的核心基础设施，BCFR是为乳腺癌跨学科合作研究建立的多代家庭的国际资源。1995年在6个地点建立的BCFR队列由来自11,900个家庭的34,000人组成，他们提供了有关家族史和流行病学风险因素以及生物标本的数据。在未来5年，BCFR研究团队将继续1)使用通用仪器和方案积极跟踪家庭队列，更新癌症家族史以识别家庭中新的乳腺癌和其他癌症，并管理随访问卷以更新基线流行病学数据；2)保持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发乳腺癌进行病理检查，完成肿瘤的分子分型，完成已知常见乳腺癌易感变异的基因分型来增强数据和生物标本资源；3)收集关于筛查、采取降低风险和预防健康行为、遗传疾病知识、采取基因检测和与家庭成员沟通的新数据，以促进研究结果转化为临床实践；4)继续

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.