The St. Jude Lifetime Cohort

圣裘德终身队列

• 批准号: 9885427
• 负责人: MELISSA M HUDSON
• 金额: $ 135.81万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-07-09 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/9885427
• 关键词: Address; Adolescent; Adult; Age; Aging; Architecture; Auditory system; Award; Behavioral Genetics; Biological Markers; Blood; Cancer Patient; Cancer Survivorship; Cardiovascular system; Childhood; Childhood Cancer Treatment; Clinical; Clinical Data; Clinical assessments; Collaborations; Communities; Complex; Custom; Data; Data Analytics; Data Set; Data Sources; Databases; Development; Diagnosis; Eligibility Determination; Endocrine system; Enrollment; Environment; Evaluation; Functional disorder; Funding; Future; Genetic; Genomics; Grant; Health behavior; Individual; Informed Consent; Infrastructure; Intervention; Intuition; Investigation; Late Effects; Long-Term Effects; Long-Term Survivors; Longevity; Malignant Childhood Neoplasm; Malignant Neoplasms; Manuscripts; Measures; Medical; Monitor; Morbidity - disease rate; Neoplasms; Neurocognitive Deficit; Outcome; Participant; Patient Self-Report; Patients; Pediatric cohort; Peer Review; Performance; Phenotype; Physiological; Population; Preventive; Productivity; Public Health; Publishing; Reproductive system; Research; Research Personnel; Resources; Respiratory System; Risk; Risk Estimate; Role; Saint Jude Children' s Research Hospital; Sampling; Secure; Services; Source; Survivors; Testing; Time; Treatment Protocols; Treatment-Related Cancer; Treatment-related toxicity; Urine; Validation; Vial device; Visit; Visualization; Visualization software; adverse outcome; base; biobank; cancer diagnosis; childhood cancer survivor; clinical application; cloud based; cohort; comorbidity; data infrastructure; data registry; data sharing; demographics; design; exome; exome sequencing; experience; field study; flexibility; follow-up; genome sequencing; genomic data; handheld mobile device; health assessment; health related quality of life; high risk population; innovation; insight; interest; interoperability; mHealth; next generation sequence data; next generation sequencing; predictive modeling; prospective; repository; research clinical testing; risk prediction model; sensor; shared database; sharing platform; sociodemographics; success; survivorship; therapy adverse effect; tool; whole genome

Abstract Because many adverse effects of treatment for childhood cancer may not become clinically apparent until the survivor attains maturity or older ages, continued follow-up across the lifespan, from childhood through adulthood, is essential. With the number of childhood cancer survivors in the U.S approaching 500,000, there is a critical need to accurately characterize the development and manifestation of very late cancer-related sequelae. In late 2007, St. Jude Children’s Research Hospital initiated a unique clinical (i.e., medically evaluated) cohort with the primary aim of undertaking lifelong evaluation of health-related and quality of life outcomes in aging adult survivors of pediatric cancer. Eligibility for participation in the St. Jude Lifetime Cohort (SJLIFE) was initially defined as survival >10 years from diagnosis, and attained age of >18 years. With the award of the U01 Cohort Infrastructure grant (U01 CA195547) in July 2015, eligibility for the cohort was modified to include >5 year survivors. Participation rates for the cohort remain high with 80.4% of the 7152 contacted survivors having been successfully enrolled and an additional 6.8% with expressed interest in participating but pending an on-campus visit to provide informed consent. As of February 1, 2019, total enrollment on SJLIFE is 5753 survivors and 629 controls. Accomplishments over the 43 months since award of the U01 include: 2657 new participants enrolled, implementation of uniform medical assessments with 4096 on-campus clinical evaluations (reflecting performance of 263,165 clinical tests), banking of biospecimens for 94% of new participants (43,240 vials), germline whole genome sequencing of 4422 survivors, 22 active investigator-initiated funded grants utilizing the cohort, 22 active intervention-based trials, 27 data sharing collaborations, and 78 manuscripts submitted with 69 published/in press. In this competitive renewal application we propose to build upon these successes through activities to maintain and enhance the SJLIFE cohort as a unique and highly productive resource for pediatric cancer survivorship research and to directly: (1) facilitate an accelerated rate of discovery in survivorship research by establishing an innovative cloud-based data sharing platform to make clinical and genomic data from the SJLIFE cohort available to the global research community; (2) facilitate the investigation of genetic contributions to and pathophysiology of treatment-associated adverse long-term outcomes among survivors of childhood cancer; and, (3) facilitate establishment of a portfolio of validated risk prediction tools for clinical use in the management of pediatric cancer patients from the time of diagnosis through survivorship. The SJLIFE cohort will continue to be unique in its ability to provide new insights into the risks and pathophysiology of morbidity associated with cancer and its therapy, which is critical to the design of contemporary treatment protocols and public health initiatives to enable survivor access to preventive and remedial services.

摘要 因为儿童癌症治疗的许多副作用可能在临床上不会显现，直到 幸存者达到成熟或更大年龄，从童年到整个生命周期持续跟踪 成年，是必不可少的。随着美国儿童癌症幸存者的数量接近50万人， 是准确描述晚期癌症相关疾病的发展和表现的迫切需要 后遗症。2007年底，圣犹大儿童研究医院启动了一项独特的临床(即医学上的 评估)队列，主要目的是对与健康相关的和生活质量进行终身评估 儿科癌症老年成年幸存者的结局。参加圣犹大终身队列的资格 (SJLIFE)最初被定义为自确诊起存活10年，并达到18岁。与 U01队列基础设施赠款(U01 CA195547)于2015年7月授予，队列资格为 修改后包括5年的幸存者。队列的参与率仍然很高，7152人中有80.4% 联系了成功登记的幸存者，另有6.8%的人表示有兴趣 参与，但正在等待校园访问，以提供知情同意。截至2019年2月1日，总计 SJLIFE的注册人数为5753名幸存者和629名控制组。自获奖以来43个月的成就 U01包括：2657名新参与者，4096名实施统一医疗评估 校园临床评估(反映263,165项临床测试的表现)，生物检验库 94%的新参与者(43,240瓶)，4422名幸存者，22名活跃的生殖系全基因组测序 利用队列、22项以积极干预为基础的试验、27项数据共享、由调查员发起的资助赠款 合作，提交了78份手稿，其中69份已出版/出版。在这场竞争性的更新中 我们计划在这些成功的基础上，通过活动来维持和加强SJLIFE 队列作为儿科癌症生存研究的独特和高效资源，并直接用于：(1) 通过建立基于云的创新解决方案，加快生存研究的发现速度 数据共享平台，将SJLIFE队列的临床和基因组数据提供给全球 研究界；(2)促进研究遗传因素对疾病的作用和病理生理学 儿童癌症幸存者中与治疗相关的不良长期结果；以及，(3)促进 建立一套经过验证的风险预测工具组合，用于儿科疾病的临床管理 癌症患者从确诊的时候到存活下来。SJLIFE队列将继续是独一无二的 它有能力对与癌症和癌症相关的发病率的风险和病理生理学提供新的见解 它的治疗对设计当代治疗方案和公共卫生倡议至关重要，以 使幸存者能够获得预防和补救服务。