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.
|Effective start/end date||9/19/16 → 9/18/17|
- National Institutes of Health (NIH)
Access to Information
Research Ethics Committees
Patient Reported Outcome Measures