Analysis of Risks and Outcomes for Rare Cancers

罕见癌症的风险和结果分析

• 批准号: 8453390
• 负责人: DIANNE M FINKELSTEIN
• 金额: $ 8.18万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-04-04 至 2016-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8453390
• 关键词: Accounting; Affect; Age; Cancer Genetics Network; Cancer Patient; Cancer Survivor; Characteristics; Choices and Control; Clinical; Comorbidity; Control Groups; Data; Data Analyses; Data Set; Diagnosis; Disease; Disease Outcome; Environmental Exposure; Etiology; Family; Family Cancer History; Family history of; Family member; Fatigue; Funding; Genetic Predisposition to Disease; Genetic screening method; Goals; Grant; Heart Diseases; Incidence; Institution; Life Style; Malignant Neoplasms; Memory Loss; Mental Depression; Methodology; Orphan; Outcome; Participant; Patients; Rare Diseases; Recording of previous events; Recruitment Activity; Registries; Research; Research Infrastructure; Risk; Second Primary Cancers; Site; Smoking; Symptoms; Test Result; United States National Institutes of Health; anticancer research; cancer diagnosis; cancer genetics; cancer site; cancer type; demographics; follow-up; genetic registry; insight; interest; mortality; programs; psychologic; tumor; Accounting; Affect; Age; Cancer Genetics Network; Cancer Patient; Cancer Survivor; Characteristics; Choices and Control; Clinical; Comorbidity; Control Groups; Data; Data Analyses; Data Set; Diagnosis; Disease; Disease Outcome; Environmental Exposure; Etiology; Family; Family Cancer History; Family history of; Family member; Fatigue; Funding; Genetic Predisposition to Disease; Genetic screening method; Goals; Grant; Heart Diseases; Incidence; Institution; Life Style; Malignant Neoplasms; Memory Loss; Mental Depression; Methodology; Orphan; Outcome; Participant; Patients; Rare Diseases; Recording of previous events; Recruitment Activity; Registries; Research; Research Infrastructure; Risk; Second Primary Cancers; Site; Smoking; Symptoms; Test Result; United States National Institutes of Health; anticancer research; cancer diagnosis; cancer genetics; cancer site; cancer type; demographics; follow-up; genetic registry; insight; interest; mortality; programs; psychologic; tumor

DESCRIPTION (provided by applicant): Taken as an aggregate, rare cancers (those affecting fewer than 200,000 people in the US according to the Orphan Disease Act definition) account for 27% of the US cancer diagnoses and 25% of cancer mortality. However, while new therapies have changed the way some common cancers are treated, there has been little advance in the treatment of most rare cancers and research directed at these diseases is sparse. The main goal of this application is to launch a research program aimed at deepening the understanding of the etiology and long-term outcomes of patients diagnosed with rare cancers. For our analyses, we will utilize data collected by the Cancer Genetics Network (CGN) and the Rare Cancer Genetics Registry (RCGR). The CGN, developed in 1998, has over 15,000 participants with cancer (of whom 873 had a rare cancer) in addition to over 5,000 of their unaffected family members. The RCGR, funded by an NIH Challenge grant in 2009, has over 400 participants with rare cancers recruited by a subset of the CGN sites. Dr. Finkelstein is the PI of the both the CGN and the RCGR. Neither the CGN nor the RCGR provided funding to support analysis of the data collected for the registries. This application plans to undertake analyses of the characteristics associated with elevated risk of rare cancers, as well as long-term outcomes of these diseases. Specific Aims include: 1. Create a single research data set from data collected in the CGN and RCGR consisting of subjects with rare cancers, those with more common cancers, and unaffected family members of participants. Available data include demographics, lifestyle and environmental exposures, medical and family history, genetic test results, cancer diagnoses, co-morbidities, treatment and survival status. On CGN participants, we have over 10 years follow-up of clinical, psychological and physical outcomes of disease and treatment. 2. Using the combined CGN and RCGR data, determine the clinical, demographic, environmental, life-style, and family history characteristics associated with an elevated risk of each rare cancer type. Questions of interest include whether rare cancer patients have a higher rate of exposures such as smoking or a different profile of family cancer history than people who do not get these cancers. 3. Using long-term (10 year) follow-up data from CGN registrants, determine the long-term outcomes in rare cancer survivors. Questions of interest include what are the risks of co-morbidities (such as heart disease) and second primary cancers, and how do these risks compare between patients with the rare cancer versus unaffected controls? What are the risks of psychological symptoms (memory loss, fatigue, depression) and are these more common than unaffected (controls)? Than in patients with common cancers? What are the demographic, clinical, lifestyle and treatment predictors of physical and psychological long-term complications in patients with rare cancers? Analyses will be done separately within each rare cancer site when possible. and an aggregated analysis using all data, accounting for age, diagnosis, registry and site will be done.

描述（由申请人提供）：作为一种总罕见的癌症（根据《孤儿疾病法》的定义，美国癌症少于200,000人的癌症）占美国癌症诊断的27％，占癌症死亡率的25％。但是，尽管新疗法改变了一些常见的癌症的治疗方式，但在治疗最罕见的癌症方面几乎没有进步，而针对这些疾病的研究很少。该应用程序的主要目标是启动一项研究计划，旨在加深对诊断为罕见癌症患者的病因和长期结局的理解。对于我们的分析，我们将利用癌症遗传网络（CGN）和罕见的癌症遗传学注册中心（RCGR）收集的数据。 CGN于1998年开发，除了5,000多个未受影响的家庭成员外，还有15,000多名癌症参与者（其中873例患有罕见癌症）。 RCGR由2009年的NIH挑战资金资助，有400多名参与者，由CGN站点的一部分招募了罕见的癌症。 Finkelstein博士是两者的PI CGN和RCGR。 CGN和RCGR都没有提供资金来支持对注册表收集的数据的分析。该申请计划对与罕见癌症的风险升高以及这些疾病的长期结局进行分析。具体目的包括：1。从CGN和RCGR中收集的数据创建一个单一的研究数据集，该数据由罕见癌症，患有更常见的癌症的受试者以及未受影响的参与者家庭成员组成。可用的数据包括人口统计学，生活方式和环境暴露，医学和家族史，基因测试结果，癌症诊断，合并症，治疗和生存状况。关于CGN参与者，我们对疾病和治疗的临床，心理和身体结局进行了10多年的随访。 2。使用联合CGN和RCGR数据，确定临床，人口，环境，生活方式和家族史特征，与每种罕见癌症的风险升高相关 类型。感兴趣的问题包括罕见的癌症患者的暴露率（例如吸烟或家庭癌症病史）与没有癌症的人不同。 3。使用CGN注册人的长期（10年）随访数据，确定稀有癌症幸存者的长期结局。感兴趣的问题包括合并症（例如心脏病）和第二次原发性癌症的风险，这些风险如何比较患有罕见癌症与未受影响的对照的患者之间的风险？心理症状（记忆力丧失，疲劳，抑郁症）的风险是什么，这些风险比未受影响的更常见（对照）？比常见癌症患者？罕见癌症患者的身体和心理长期并发症的人口，临床，生活方式和治疗预测因素是什么？在可能的情况下，将在每个罕见的癌症部门中分别进行分析。使用所有数据进行汇总的分析，核算年龄，诊断，注册表和现场。