Clinical registry Core

临床协调核心(核心C)为具有遗传性结肠癌风险的个人和家庭提供全面的长期资源，用于临床和基础研究以及临床护理。CORE C协调家族结肠癌登记处、结肠癌研究诊所、主题数据库、犹他州人口数据库的系谱和生命统计数据、犹他州和爱达荷州癌症登记处以及组织资源和应用核心设施，以形成一个连贯的、可访问的信息库。 由这个核心协调的诊所的工作人员包括内科科学家、护士、协调员、遗传顾问和计算机专业人员。这一核心的活动包括：邮件和电话对象联系、研究登记、知情同意的管理、人口统计、流行病学、病史和家族癌症病史数据收集、血液和组织采样以及临床护理。临床护理包括教育；遗传咨询和检测；癌症筛查；息肉和癌症诊断的结肠镜检查、转诊治疗和持续护理；根据需要进行上Gl内窥镜检查；以及适当的患者随访。长期参与是通过注册中心完成的，该注册中心跟踪患者并发送教育信息，以及可能登记参加研究的通知。该登记处登记了患有遗传性综合征的家庭成员以及定义较不明确的家族性结肠癌患者的家庭成员。 计算机化的数据管理允许存储和查询医疗和家族历史信息；跟踪患者互动、遗传和分子检测信息；以及血液和组织采样(包括采集、处理、存储、跟踪和分发)。所有数据系统和信息都是安全的。 核心C将作为患者转介到项目1的临床试验的资源，该项目将评估哪些已知的与结肠癌进展有关的途径被COX和EFGR抑制剂的使用所抑制。确定的腺瘤和正常组织样本将在项目1中收集，在组织资源和应用核心设施中存档，并与主题数据库中的医疗、遗传和家族史记录相联系，以用于数据分析。来自这些相同种类的生物标本，通过家族扩大和犹他州人口数据库的使用，将被其他项目使用，以增强他们的系统生物学方法来剖析肿瘤进展的途径。

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.