Clinical registry Core

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The Clinical Coordination Core (Core C) provides a comprehensive long-term resource for clinical and basic investigation as well as clinical care for persons and families with inherited risk of colon cancer. Core C coordinates the Familial Colon Cancer Registry, the Colon Cancer Research Clinics, the Subject Database, the genealogies and vital statistics of the Utah Population Database, the Utah and Idaho Cancer Registries, and the Tissue Resource and Applications Core Facility to form a cohesive, accessible, repository of information. The clinics coordinated by this core are staffed by physician-scientists, nurses, coordinators, genetic counselors, and computer professionals. Activities of this core include: mail and telephone subject contact, study registration, administration of informed consent, demographic, epidemiological, medical history and family cancer history data gathering, blood and tissue sampling, and clinical care. Clinical care includes education; genetic counseling and testing; cancer screening; colonoscopy for polyp and cancer diagnosis, referral for treatment, and continuation of care; upper Gl endoscopy as indicated; and appropriate patient follow-up. Long-term participation is accomplished through the registry, which tracks patients and sends educational information, and notification for possible enrollment in studies. The Registry enrolls family members of those with inherited syndromes as well as members with less well-defined familial colon cancer. Computerized data management permits storage and queries of medical and family history information; tracking of patient interactions, genetic, and molecular testing information; and blood and tissue sampling (encompassing acquisition, processing, storage, tracking and distribution). All data systems and information are secured. Core C will serve as a referral resource for patients to the clinical trial of Project 1, which will assess which pathways known to be involved in colon cancer progression are suppressed by the use of COX and EFGR inhibitors. Deidentified adenomatous and normal tissue samples will be collected in Project 1, archived in the Tissue Resource and Applications Core Facility, and linked to medical, genetic, and family history records in the Subject Database for use in data analysis. Biospecimens from these same kindreds, expanded through family expansion and the use of the Utah Population Database, will be used by the other projects, to augment their systems biology approach to pathway dissection of tumor progression.