Online Pediatric Cancer Aggregation Resource (OPCARe)

项目摘要 在线儿科癌症聚集资源（OPCARe）注册将采用基于网络的健康 儿童癌症患者、家庭和幸存者，否则他们可能无法获得 癌症登记网站。个人将从各种来源了解注册表，包括合作 供应商（儿科肿瘤学家，遗传学诊所，长期幸存者诊所），商业基因检测 实验室，儿科癌症支持团体和协会以及在线外展和雪球 招聘 我们的目标是：1）开发和试点一个安全的基于网络的平台，与患者和提供者的界面，以 儿童癌症患者的汇总数据，包括接受MSK-IMPACT靶向肿瘤治疗的患者， 匹配的正常测序测试以及疑似或已知癌症易感性的幸存者 2）人口统计学、治疗暴露、基因型和表型、慢性 健康状况、临床晚期效应、家族史、生活方式因素和参与者的经济毒性 通过目标1所述的平台;以及3）在 包装并转移到国家儿童癌症登记处（NCCR）。 该研究的登陆页面将提供有关登记，癌症遗传学， 存活率和相关癌症协会，从而改善患者教育机会。它还将 包括提供者接口以改进患者健康数据收集。安全平台将包括一个 患者参与的数字知情同意书以及适当的权限将汇总信息 通过研究问卷和通过医疗机构获得的文件， 记录发布，并从支持团体或协会收集成员数据。随访评估 也可以在稍后的日期发送给参与者。参与者可以选择加入，以便将来联系 生物样本采集和/或心理测量调查参与。 将监测数据的应计和完整性，并将比较各种来源的数据， 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进行。 OPCARe将是一种获取缺乏的治疗、遗传和结果数据的手段， 促进我们对儿科癌症和这些罕见肿瘤的自然史的理解。这将使患者 那些可能无法访问癌症登记的人参加一个可访问的在线登记， 这是互联网接入在全国范围内日益普及的优势。患者和参与者 他们的临床护理（如肿瘤学家、遗传学和生存诊所、检测实验室）将成为 全面的数据。

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.