Breast Cancer Family Registry Cohort

乳腺癌家族登记(BCFR)队列是一个庞大的、具有良好特征的国际队列。 为跨学科协作研究而创建的多代家庭。成立于 1995年，在美国、加拿大和澳大利亚的六个地点，我们招募并跟踪了40029人(33,037人 女性和6992名男性)，来自15,056个家庭，涵盖所有家庭风险和/或遗传 性情。通过招募几代人的多个家庭成员，BCFR队列是 与其他无关个体不同，并具有广泛的绝对乳腺癌风险，这 能够调查影响乳腺癌易感性和诊断后预后的因素 风险的范围。BCFR Cohort还因其全面的生物样品资源而独一无二，包括 许多参与者的细胞系补充标准存储的DNA、血浆和组织样本。我们有 跟踪了基线时未受影响的(27,671人)和受影响的(12,358人)乳腺癌患者 最长25年(平均随访时间分别为15.2年和16.1年)和前瞻性 共确定乳腺癌发病879例，二次乳腺癌863例。的首要目标是 此应用程序旨在通过以下方式构建和增强核心基础设施，从而丰富BCFR团队 针对癌症新假说的长期前瞻性数据收集和关键标记物测量 病因学、存活率和存活率。我们的目标是回答有关生命过程中风险积累的作用的问题， 暴露的关键窗口，以及导致年轻人乳腺癌发病率增加的因素 女人。我们建议在未来五年内继续在所有六个地点采取系统和协调的方法 年：1)通过招募18-39岁的年轻女性亲属来加强BCFR队列 登记家庭成员并收集月经周期、激素暴露和体格检查的详细数据 使用移动应用程序技术的活动；2)保留和跟踪BCFR队列的当前注册成员 通过另一波后续调查问卷，以及与癌症和死亡登记的联系；3)创建一个大的 多个“组学”数据集的数据库(例如，全基因组、系列数字乳房X光照片)；以及4)扩展 生物标本资源，包括组织采集和重复血样采集。这些活动将 包括收集和更新详细风险因素、生物制品、临床和结果数据 方法和技术(例如，移动应用程序技术、光谱学)和大数据方法。 随着这些组成部分的增加，我们将继续为研究界提供重要的和 独特的家庭队列，解决癌症易感性的临床重要性的尖端研究问题， 生存和生存(例如，风险评估、早期检测标记的识别、知识和 风险感知)。通过这个资源，我们设想了一个巨大的翻译研究平台，它将 就与一级、二级和三级预防工作有关的复杂问题提供严格的证据。

The Breast Cancer Family Registry (BCFR) Cohort is a large and well-characterized international cohort of multi-generational families that has been created for interdisciplinary collaborative research. Established in 1995 at six sites across the US, Canada and Australia, we recruited and followed 40,029 individuals (33,037 women and 6,992 men) from 15,056 families across the full spectrum of familial risk and/or genetic predisposition. Through recruitment of multiple family members across generations, the BCFR Cohort is unique from other cohorts of unrelated individuals, and has a wide range of absolute breast cancer risk, which enables investigation of factors that modify breast cancer susceptibility and outcomes after diagnosis across the spectrum of risk. The BCFR Cohort is also unique for its comprehensive biospecimen resources, including cell lines for many participants complementing standard stored DNA, plasma and tissue samples. We have followed individuals who were unaffected (n=27,671) and affected (n=12,358) with breast cancer at baseline for up to 25 years (average length of follow-up = 15.2 and 16.1 years, respectively) and prospectively ascertained 879 incident breast cancers and 863 second breast events, respectively. The overarching goal of this application is to enrich the BCFR Cohort by building upon and enhancing the core infrastructure using long-term prospective data collection and measurement of key markers to address novel hypotheses in cancer etiology, survival and survivorship. We aim to answer questions on the role of life course accumulation of risk, critical windows of exposure, and the factors underling the increase in breast cancer incidence in young women. We propose to continue a systematic and coordinated approach across all six sites over the next five years to: 1) enhance the BCFR Cohort by enrolling young women aged 18–39 years who are relatives of enrolled family members and collecting detailed data on menstrual cycles, hormone exposure and physical activity using mobile app technology; 2) retain and follow currently enrolled members of the BCFR Cohort through another wave of follow-up questionnaires, and linkages to cancer and death registries; 3) create a big data repository of multiple “omics” datasets (e.g., whole genome, serial digital mammograms); and 4) expand the biospecimen resources, including collection of tissue and repeat blood samples. These activities will include collection and updating of detailed risk factor, biospecimen, clinical, and outcome data through novel approaches and technology (e.g., mobile app technologies, optical spectroscopy) and big data approaches. With the addition of these components, we will continue to provide the research community an important and unique family cohort to address cutting-edge research questions of clinical importance on cancer susceptibility, survival and survivorship (e.g., risk assessment, identification of early detection markers, knowledge and perception of risk). Through this resource, we envision a large platform for translational research that will provide rigorous evidence on complex questions related to primary, secondary and tertiary prevention efforts.