The St. Jude Lifetime Cohort

圣裘德终身队列

• 批准号: 10428471
• 负责人: MELISSA M HUDSON
• 金额: $ 87.03万
• 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/10428471
• 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; 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.

抽象的 因为治疗对儿童癌症的许多不良影响可能在临床上可能不会显而易见 幸存者达到成熟或以上的年龄，从童年到整个生命周期的继续跟进 成年是必不可少的。在美国，儿童癌症的生存次数接近500,000，那里 准确表征与晚期癌症相关的非常晚期的发展和表现是至关重要的 后遗症。 2007年底，圣裘德儿童研究医院发起了独特的临床（即医学上 评估）的主要目的是对健康相关和生活质量进行终身评估 小儿癌的成年成人生存期的结果。参与圣裘德终生队列的资格 （SJLife）最初定义为诊断> 10年的生存，并且年龄> 18岁。与 2015年7月，U01队列基础设施授予（U01 CA195547）的奖励，该队列的资格为 修改为包括> 5年的幸存。该队列的参与率仍然很高，占7152的80.4％ 已成功入学的幸存者，另外有6.8％的人对 参加但要进行校园访问以提供知情同意。截至2019年2月1日，总计 SJLife的入学人数为5753个冲浪者和629个对照。自授予以来的43个月的成就 U01包括：2657名新参与者参加，实施4096的统一医疗评估 校园临床评估（反映263,165次临床测试的性能） 94％的新参与者（43,240个小瓶），4422个冲浪者的种系整体测序，22个活跃 研究者使用队列，22项基于干预的试验，27个数据共享的资助赠款 合作，以及78份手稿，与69名出版/媒体提交。在这个竞争性更新中 我们建议通过活动来维护和增强SJLIFE的活动来建立这些成功 队列作为儿科癌症生存研究的独特且高产的资源，直接：（1） 通过建立创新的基于云的创新 数据共享平台可从SJLife队列中提供临床和基因组数据 研究社区； （2）促进对遗传学贡献和病理生理的投资 儿童癌症中与治疗相关的不良长期结局；并且，（3）便利 建立一个经过验证的风险预测工具，用于临床用于小儿管理 癌症患者从诊断到生存期。 SJLife队列将继续是独特的 它能够对与癌症和 它的疗法，这对于当代治疗方案和公共卫生计划的设计至关重要 使幸存者获得预防和补救服务。