IGF::OT::IGF PILOT STUDY TO DETERMINE FEASIBILITY OF OBTAINING PATIENT REPORTED OUTCOMES FROM CANCER SURVIVORS TO ENHANCE SEER REGISTRIES. PERIOD PF PERFORMANCE SEPTEMBER 19, 2016 - SEPTEMBER 18, 2017

癌症幸存者经常要面对无数的身体、心理、经济和社会后果，有些是可以预测的，有些是未知的。关于新疗法的长期影响的信息很少，特别是对于临床试验中代表性不足的弱势人群，如老年人，少数民族和患有多种共病的人群。拟议的试点研究将开发通过SEER登记系统加强癌症监测的方法，探索将癌症登记系统用作支持收集更广泛信息的基础的机会，与NCI和SEER计划的使命一致，以支持研究如何改善临床癌症结局。本研究的目的是：1）与NCI工作人员合作制定通用方案和问卷，以识别、联系和评估患者提供信息和参与未来调查的意愿，2）定义与联系患者和获得自我报告信息以及同意访问医疗记录相关的障碍和挑战，3）评估识别、联系、招募并同意接受治疗的新诊断患者和癌症幸存者提供额外信息，以支持未来的登记数据收集，包括机构审查委员会（IRB）的要求和联系方法（例如，直接联系或通过健康护理提供者），4）评估癌症登记处的患者允许访问医疗记录和肿瘤标本的意愿，并可能贡献其他生物标本，如血液样本;并确定完成这些任务所需的资源。

Cancer survivors often deal with a myriad of physical, psychological, financial and social consequences, some predictable and others unknown. Information on long-term effects of new therapies is sparse, especially for vulnerable populations under-represented in clinical trials such as the elderly, minorities, and those with multiple co-morbid conditions. The proposed pilot study will develop methods to enhance cancer surveillance through the SEER registries by exploring the opportunity to use cancer registries as a base that will support collection of broader information, consistent with the mission of the NCI and the SEER Program, to support investigations into how to improve clinical cancer outcomes. The objectives of this study are: 1) Collaborate with NCI staff in developing a common protocol and questionnaires to identify, contact and assess the patient's willingness to provide information and to participate in future investigations, 2) Define barriers and challenges related to contacting patients and obtaining self-reported information and consent to access medical records, 3) Assess the process of identifying, contacting, recruiting and consenting newly diagnosed patients who are undergoing treatment and cancer survivors to provide additional information to support future registry data collection, including requirements of institutional review boards (IRB) and methods of contact (e.g., direct contact or via health care provider), 4) Assess the willingness of patients in cancer registries to allow access to medical records and tumor specimens, and potentially contribute other biospecimens such as blood samples; and identify resources needed to accomplish these tasks.