Online Pediatric Cancer Aggregation Resource (OPCARe)

在线儿科癌症聚合资源 (OPCARe)

• 批准号: 10459732
• 负责人: CRAIG B THOMPSON
• 金额: $ 20万
• 依托单位: SLOAN-KETTERING INST CAN RESEARCH
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10459732
• 关键词: 21 year old; Adult; Affect; American Association of Cancer Research; Cancer Patient; Catalogs; Child; Child Care; Chronic; Clinic; Clinical; Clinical Data; Collaborations; Collection; Consultations; Country; Data; Data Aggregation; Data Collection; Data Reporting; Databases; Education; Educational Materials; Equipment and supply inventories; Family; Family history of; Future; Genetic; Genetic Variation; Genome; Genomics; Genotype; Health; Heritability; Individual; Informed Consent; Inherited; Internet; Joint Ventures; Laboratories; Late Effects; Learning; Legal; Long-Term Survivors; Longterm Follow-up; Malignant Childhood Neoplasm; Malignant Neoplasms; Medical; Medical Records; Memorial Sloan-Kettering Cancer Center; Modeling; Monitor; Natural History; Oncologist; Online Systems; Outcome; Participant; Pathogenicity; Patient Education; Patient Participation; Patients; Pediatric Neoplasm; Pediatric Oncologist; Pediatric Oncology Group; Penetration; Phenotype; Provider; Psychometrics; Quality Control; Questionnaires; Recording of previous events; Registries; Reporting; Research; Research Personnel; Resources; Saint Jude Children' s Research Hospital; Sampling; Secure; Site; Source; Specialist; Support Groups; Surveys; Survivors; Syndrome; Testing; Toxic effect; Tumor Subtype; United States National Institutes of Health; Variant; cancer care; cancer genetics; cancer predisposition; clinical care; clinical encounter; crowdsourcing; data exchange; data quality; demographics; digital; digital health; experience; financial toxicity; follow up assessment; genetic testing; genomic data; health data; improved; lifestyle factors; medical specialties; member; neoplasm registry; online registry; outreach; patient outreach; pediatric patients; prospective; rare cancer; recruit; survivorship; tumor

PROJECT SUMMARY The Online Pediatric Cancer Aggregation Resource (OPCARe) registry will employ a web-based health solution to reach pediatric cancer patients, families, and survivors who might not otherwise have access to cancer registry sites. Individuals will learn of the registry from a variety of sources including collaborating providers (pediatric oncologists, genetics clinics, long-term survivor clinics), commercial genetic testing laboratories, and pediatric cancer support groups and associations as well as online outreach and snowball recruitment. We aim to: 1) Develop and pilot a secured web-based platform with patient- and provider-interfaces, to aggregate data on childhood cancer patients including those undergoing MSK-IMPACT targeted tumor- and matched normal-sequencing testing as well as survivors with suspected or know cancer predisposition syndromes; 2) Aggregate data on demographics, treatment exposure, genotypes and phenotypes, chronic health conditions, clinical late effects, family history, lifestyle factors, and financial toxicity on participats through the platform described in Aim 1; and 3) Complete an assessment of the quality of data prior to packaging and transferring it to the National Childhood Cancer Registry (NCCR). The study’s landing page will provide relevant educational materials on the registry, cancer genetics, survivorship, and relevant cancer associations, thus improving patient education opportunities. It will also include a provider interface to improve collection of patient health data. The secure platform will include a digital informed consent for patient participation and with appropriate permissions will aggregate information from patients and providers by way of research questionnaires and documents obtained through medical record releases, and from support groups or associations who collect member data. Follow-up assessments can also be sent to participants at a later date. Participants can optionally opt-in for future contact about biospecimen collection and/or psychometric survey participation. Accruals and completeness of data will be monitored, and data from various sources will be compared for accuracy as part of quality control checks. Data transfer between OPCARe and NCCR will occur regularly. OPCARe will be a means to capture lacking treatment, genetic, and outcome data which are needed to advance our understanding of pediatric cancer and the natural history of these rare tumors. It will allow patients who might not otherwise have access to cancer registries to participate in an accessible online registry, taking advantage of the increasing penetration of internet access across the country. Patients and those involved in their clinical care (e.g. oncologists, genetics and survivorship clinics, testing labs) will be sources of comprehensive data.

项目摘要 在线儿科癌症聚集资源（OPCARE）注册表将采用基于网络的健康 接触儿科癌症患者，家庭和生存的解决方案，他们可能无法获得 癌症注册处。个人将从各种来源中学习注册表，包括合作 提供者（小儿肿瘤学家，遗传学诊所，长期幸存者诊所），商业基因检测 实验室，小儿癌症支持小组和协会以及在线外展和滚雪球 招聘。 我们的目标是：1）开发并试行一个带有患者和提供商的基于网络的基于安全的平台，以便 关于儿童癌症患者的汇总数据，包括受到MSK影响靶向肿瘤的患者和 匹配的正常测试测试以及怀疑或知道癌症易感性的冲浪者 综合征； 2）关于人口统计学，治疗暴露，基因型和表型的汇总数据，慢性 健康状况，临床后期影响，家族史，生活方式因素和参与的财务毒性 通过AIM 1中描述的平台； 3）完成对数据质量的评估 包装并将其转移到国家儿童癌症注册表（NCCR）。 该研究的着陆页将提供有关注册表，癌症遗传学的相关教育材料， 生存和相关的癌症协会，从而改善了患者的教育机会。它也会 包括提供者界面，以改善患者健康数据的收集。安全平台将包括 数字知情同意患者参与并获得适当的权限将汇总信息 通过医学研究的研究问卷和文件从患者和提供者那里 记录发布，以及收集成员数据的支持小组或协会。后续评估 也可以在以后发送给参与者。参与者可以选择选择将来接触 生物测量收集和/或心理测量调查参与。 将监控应计数据和数据的完整性，并将来自各种来源的数据进行比较 精度作为质量控制检查的一部分。 OPCARE和NCCR之间的数据传输将定期发生。 OPCARE将是捕获缺乏治疗，遗传和结果数据的一种手段 促进我们对小儿癌和这些罕见肿瘤的自然历史的理解。它将允许患者 谁可能无法访问癌症注册表来参加可访问的在线注册表 全国互联网访问渗透率不断增加的优势。患者和参与的患者 他们的临床护理（例如肿瘤学家，遗传学和生存诊所，测试实验室）将是 综合数据。