Analysis of Risks and Outcomes for Rare Cancers

罕见癌症的风险和结果分析

基本信息

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
项目类别：
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

项目摘要

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）：从总体来看，罕见癌症（根据《孤儿病法案》的定义，在美国影响不到 200,000 人的癌症）占美国癌症诊断的 27% 和癌症死亡率的 25%。然而，虽然新疗法改变了一些常见癌症的治疗方式，但大多数罕见癌症的治疗几乎没有取得进展，而且针对这些疾病的研究也很少。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的患者的病因和长期结果的了解。在我们的分析中，我们将利用癌症遗传学网络 (CGN) 和罕见癌症遗传学登记处 (RCGR) 收集的数据。 CGN 成立于 1998 年，除了 5,000 多名未患病的家庭成员外，还有超过 15,000 名患有癌症的参与者（其中 873 人患有罕见癌症）。 RCGR 由 2009 年 NIH 挑战拨款资助，由部分 CGN 站点招募了 400 多名患有罕见癌症的参与者。 Finkelstein 博士是这两个项目的 PI CGN 和 RCGR。 CGN 和 RCGR 均未提供资金来支持对注册管理机构收集的数据进行分析。该应用程序计划对与罕见癌症风险升高相关的特征以及这些疾病的长期结果进行分析。具体目标包括： 1. 根据 CGN 和 RCGR 中收集的数据创建单一研究数据集，其中包括患有罕见癌症的受试者、患有较常见癌症的受试者以及未受影响的参与者家庭成员。可用数据包括人口统计、生活方式和环境暴露、医疗和家族史、基因检测结果、癌症诊断、合并症、治疗和生存状况。对于 CGN 参与者，我们对疾病和治疗的临床、心理和身体结果进行了 10 多年的随访。 2. 使用合并的 CGN 和 RCGR 数据，确定与每种罕见癌症风险升高相关的临床、人口统计、环境、生活方式和家族史特征类型。令人感兴趣的问题包括罕见癌症患者是否比未患这些癌症的人有更高的暴露率（例如吸烟）或不同的家族癌症史。 3. 使用 CGN 注册者的长期（10 年）随访数据，确定罕见癌症幸存者的长期结果。感兴趣的问题包括合并症（例如心脏病）和第二原发癌症的风险是什么，以及罕见癌症患者与未受影响的对照患者之间的这些风险如何比较？心理症状（记忆丧失、疲劳、抑郁）的风险是什么？这些症状比不受影响的（对照）更常见吗？与普通癌症患者相比？罕见癌症患者身体和心理长期并发症的人口统计学、临床、生活方式和治疗预测因素有哪些？如果可能，将在每个罕见癌症部位单独进行分析。并将使用所有数据进行汇总分析，包括年龄、诊断、登记和地点。

项目成果

期刊论文数量（1）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Physical symptoms in long-term survivors of rare cancer.

罕见癌症长期幸存者的身体症状。

DOI：
10.1007/s11764-018-0721-9
发表时间：
2018
期刊：
Journal of cancer survivorship : research and practice
影响因子：
0
作者：
Horick,NoraK;Muzikansky,Ariela;Gutierrez,HildaL;Boyd,KristinaL;Finkelstein,DianneM
通讯作者：
Finkelstein,DianneM