CHILDHOOD CANCER SURVIVOR STUDY: Somatic and Germline Sequencing

儿童癌症幸存者研究：体细胞和种系测序

• 批准号: 10678480
• 负责人: Gregory Armstrong
• 金额: $ 384.73万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 1993
• 资助国家: 美国
• 起止时间: 1993-07-20 至 2026-11-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10678480
• 关键词: Address; Adolescent; Aging; Biological; Cancer Survivorship; Child; Childhood; Childhood Cancer Survivor Study; Cohort Studies; Communities; DNA sequencing; Data; Data Analyses; Data Collection; Diagnosis; Disease susceptibility; Ecosystem; Ensure; Functional disorder; Funding; Future; Genetic Predisposition to Disease; Genotype; Goals; Grant; Guidelines; Health; Health Services Research; Healthcare Systems; Home; Immunotherapy; International; Intervention; Intervention Trial; Investigation; Knowledge; Late Effects; Life; Malignant Childhood Neoplasm; Malignant Neoplasms; Manuscripts; Modeling; Morbidity - disease rate; Neurocognitive; Outcome; Participant; Patients; Performance; Phenotype; Physiological; Population; Provider; Publications; Publishing; Quality of life; Radiation; Research; Research Personnel; Resources; Risk; SNP array; Source; Survival Rate; Survivors; Time; Visualization; age related; base; biobank; care costs; career; childhood cancer survivor; clinical care; cloud based; cohort; data access; data tools; follow-up; genetic analysis; health related quality of life; high risk population; improved; innovation; mortality; multidisciplinary; novel therapeutics; proton beam; randomized trial; recruit; sample collection; screening guidelines; shared database; sharing platform; survivorship

ABSTRACT The Childhood Cancer Survivor Study (CCSS) is a multi-institutional, multi-disciplinary collaborative research resource established to systematically evaluate long-term outcomes among children diagnosed with cancer who survived five or more years from diagnosis. With the successful recruitment and longitudinal follow-up of the cohort that includes survivors diagnosed and treated over three decades (1970-1999), the CCSS is the world’s largest established open resource for survivorship research with 38,036 eligible survivors available for investigation of late mortality, and 25,665 participants who have contributed health-related and quality of life outcomes. The resource includes comprehensive annotation of treatment exposures, ongoing longitudinal follow-up and an established biorepository from which genotype (SNP array) and DNA sequencing of 8,380 survivors are available to investigators for identification of genetic susceptibility for disease- and treatment- related late effects. Extensive use by the research community has resulted in: 381 published or in press manuscripts now cited over 26,500 times; 347 presented abstracts; 59 investigator-initiated grants funded, totaling $67 million in funding; utilization by a diverse group of 1,225 investigators including 91 early career trainees; conduct of 11 randomized trials; increased knowledge to inform exposure-based clinical care guidelines; and a highly successful model for multiple national and international collaborative initiatives of pediatric cancer survivorship research. During the next five years, activities will ensure the functioning of CCSS as a strong and productive resource by maintaining, enhancing and promoting its use. We will expand the collection of data to evaluate physiologic and neurocognitive function with aging, characterize accelerated aging, and investigate underlying pathophysiology of aging of survivors as they enter into their fourth, fifth and sixth decades of life. To develop a population resource for intervention trials targeting age-related outcomes, in-home functional performance assessment and specimen collection will be performed in a sub-cohort of 1000 survivors. Further, we will enhance the CCSS resource by facilitating the conduct of health services research through collection of data to evaluate patient, provider, and health care system factors and their associations with access, quality, and cost of care. To maximize the research community’s access and use of the CCSS resource, we will leverage a cloud-based data sharing platform and develop a data analysis ecosystem with tools for data access, visualization and analysis of genetic, treatment and phenotypic/outcome data. In the future, assessment of late outcomes of novel therapies (immunotherapy, targeted/biologic, proton beam radiation) will be essential. Therefore, with NCI oversight, CCSS will formulate a comprehensive plan for future expansion. These initiatives will enhance and promote CCSS to further achieve the overarching goal of the CCSS resource to increase the conduct of innovative and high impact research related to pediatric cancer survivorship.

抽象的 儿童癌症幸存者研究（CCSS）是一项多机构的多学科合作研究 建立的资源是为了系统地评估被诊断为癌症的儿童的长期结局的资源 从诊断术中幸存了五年或更长时间。随着成功的招募和纵向随访 CCSS是世界上的三十年（1970- 1999年），包括经过诊断和治疗的生存的队列 最大的既定开放资源用于生存研究，有38,036个合格的表面 对晚期死亡率的调查，以及有25,665名参与者，他们贡献了与健康有关的生活质量 结果。资源包括全面的治疗暴露注释，正在进行的纵向 后续和已建立的生物座，基因型（SNP阵列）和8,380的DNA测序 研究人员可以使用幸存者来鉴定疾病和治疗的遗传易感性 相关的后期效果。研究社区的广泛使用已导致：381张发表或媒体发表 手稿现在被引用了26,500次； 347提出摘要； 59研究者发起的赠款，资助 总计6700万美元的资金；一个由1,225名调查人员组成的潜水员组的利用，包括91名早期职业 学员；进行11项随机试验；增加知识以告知基于曝光的临床护理 准则；以及针对多个国家和国际合作计划的非常成功的模型 小儿癌的生存研究。在接下来的五年中，活动将确保CCSS的运作 通过维护，增强和促进其使用，作为强大而有效的资源。我们将扩展 收集数据以评估衰老的生理和神经认知功能，表征加速衰老， 并研究生存衰老的潜在病理生理学时，它们进入第四，第五和第六 数十年的生活。为针对与年龄相关的结果的干预试验开发人口资源 功能性能评估和标本收集将在1000个表面的亚船类中进​​行。 此外，我们将通过支持通过支持卫生服务研究研究的CCSS资源 收集数据以评估患者，提供者和医疗保健系统因素及其与访问的关联， 质量和护理成本。为了最大程度地利用研究界的访问和使用CCSS资源，我们将 利用基于云的数据共享平台，并使用用于数据访问的工具开发数据分析生态系统， 遗传，治疗和表型/结果数据的可视化和分析。将来，评估最近 新型疗法的结果（免疫疗法，靶向/生物学，质子束辐射）至关重要。 因此，通过NCI的监督，CCSS将制定一项未来扩展的全面计划。这些举措 将增强和促进CCSS，以进一步实现CCSS资源的总体目标 与儿科癌症生存有关的创新和高影响研究的进行。