ExtractEHR Pilot Childhood Cancer Data Initiative (CCDI)

ExtractEHR 儿童癌症数据试点计划 (CCDI)

• 批准号: 10852234
• 负责人: Gregory Armstrong
• 金额: $ 91.76万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-06-01 至 2026-11-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10852234
• 关键词: Address; Adolescent; Child; Childhood; Childhood Cancer Survivor Study; Cohort Studies; DNA sequencing; Data; Diagnosis; Disease susceptibility; Ecosystem; Eligibility Determination; Future; Genetic Predisposition to Disease; Genotype; Health; Institution; Intervention; Investigation; Late Effects; Malignant Childhood Neoplasm; Malignant Neoplasms; Morbidity - disease rate; Outcome; Participant; Publications; Quality of life; Research; Research Personnel; Resources; Risk; SNP array; Source; Survival Rate; Survivors; biobank; cancer therapy; childhood cancer survivor; cohort; follow-up; health related quality of life; high risk population; improved; mortality; multidisciplinary; recruit; screening guidelines; survivorship; tool

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. The objective of the current supplement application is to pilot an extraction tool to capture cancer treatment information for survivors of childhood cancer. Results will inform a future expansion of the Childhood Cancer Survivor Study. All data from this supplement will be submitted to the Childhood Cancer Data Initiative (CCDI) Ecosystem.

抽象的 儿童癌症幸存者研究（CCSS）是一项多机构、多学科的合作研究 建立资源系统地评估被诊断患有癌症的儿童的长期结果 通过成功的招募和纵向随访，患者在诊断后存活了五年或更长时间。 CCSS 的队列包括三十年（1970-1999）期间诊断和治疗的幸存者，CCSS 是世界上 最大的幸存者研究开放资源，有 38,036 名符合资格的幸存者可供使用 对晚期死亡率的调查，以及对健康相关和生活质量做出贡献的 25,665 名参与者 该资源包括治疗暴露的综合注释、持续的纵向研究。 后续行动和已建立的生物样本库，其中包含 8,380 个样本的基因型（SNP 阵列）和 DNA 测序 研究人员可以利用幸存者来鉴定疾病和治疗的遗传易感性 当前补充应用程序的目标是试用提取工具来捕获。 儿童癌症幸存者的癌症治疗信息结果将为未来的扩展提供信息。 本补充材料中的所有数据都将提交给儿童癌症数据中心。 倡议（CCDI）生态系统。