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

癌症幸存者通常面临着无数的身体、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，特别是对于在临床试验中代表性不足的弱势群体，如老年人、少数族裔和患有多种共病疾病的人。拟议的试点研究将开发通过SEER登记加强癌症监测的方法，探索将癌症登记作为基础的机会，以支持收集更广泛的信息，与NCI和SEER计划的使命保持一致，以支持对如何改善临床癌症结果的调查。这项研究的目标是：1)与NCI工作人员合作，制定共同的协议和问卷，以确定、联系和评估患者提供信息和参与未来调查的意愿；2)确定与接触患者和获取自我报告信息并同意访问医疗记录有关的障碍和挑战；3)评估识别、联系、招募和同意正在接受治疗的新诊断患者和癌症幸存者以提供额外信息的过程，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，直接接触或通过医疗保健提供者)，4)评估癌症登记处的患者是否愿意允许查阅医疗记录和肿瘤标本，并有可能提供其他生物检验品，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.