Utah Population Database Shared Resource

犹他州人口数据库共享资源

• 批准号: 8533399
• 负责人: GERALDINE P MINEAU
• 金额: $ 0.34万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/8533399
• 关键词: Adenomatous Polyposis Coli; Advisory Committees; Average Family Sizes; BRCA1 gene; BRCA2 gene; Behavioral Research; Birth Records; Budgets; Calendar; Cancer Center; Cancer Center Support Grant; Cancer Cluster; Cancer-Predisposing Gene; Cessation of life; Chromosome Mapping; Church of Jesus Christ of Latter-day Saints; Clinical; Clinical Treatment; Collaborations; Computer software; Data; Data Set; Databases; Death Certificates; Disease; Divorce; Doctor of Philosophy; Epidemiologic Studies; Epidemiology; Event; Faculty; Family; Funding; Genealogy; Genes; Genetic; Genetic Research; Genetic screening method; Goals; Grant; Health; Health Sciences; Healthcare; Hospital Records; Hospitals; Human Resources; Idaho; Individual; Informatics; Inpatients; Institutes; Institutional Review Boards; Integrated Health Care Systems; Investigation; Libraries; Licensing; Link; Malignant Neoplasms; Marriage; Medical; Medical Records; Molecular Target; Neurofibromatosis 1; Oncogenes; Outcome; Pattern; Peer Review; Persons; Population; Population Database; Prevention; Privacy; Process; Public Health; Recording of previous events; Records; Reporting; Research; Research Design; Research Infrastructure; Research Personnel; Research Project Grants; Resource Sharing; Resources; Science; Social Security; Supervision; Surveys; Syndrome; United States; Universities; Update; Utah; Vital Statistics; Work; anticancer research; cancer recurrence; cancer risk; case control; data registry; gene discovery; genetic pedigree; genetic resource; human disease; improved; indexing; kindred; malignant breast neoplasm; melanoma; member; neoplasm registry; outreach; programs; research study; satisfaction; segregation; tool

The Utah Population Database (UPDB) holds approximately 12 million records in which an extensive set of Utah genealogies is linked to large sets of medical records (including cancer records) and other types of data. It supports more than 90 research projects and is a rich research resource for genetic, epidemiological, demographic, and public health studies. In addition to genealogies and Cancer Registry data from Utah and Idaho, UPDB is linked to inpatient hospital records and vital records, including Utah death certificates. These data allow the identification of familial clustering of cancer. Studies may have a research design that incorporates kinship/pedigree structure or that uses a case control outcomes approach. Software has been developed that readily provides researchers information about cancer risk, segregation patterns, and pedigree size. The goals of the UPDB Shared Resource are to do the following: ¿ Maintain the UPDB research infrastructure by annually updating and linking statewide records, including cancer, vital records, driver license data, and inpatient hospital events ¿ Facilitate access to medical information in the enterprise data warehouses of the University of Utah Health Sciences Center and Intermountain Healthcare, as well as the Utah Department of Health ¿ Maintain pedigree infrastructure and analysis tools ¿ Provide access to UPDB and expertise in its use to support research projects ¿ Provide ongoing information such as deaths and cancer recurrence to research projects These activities require resources beyond the scope of any single research project. The UPDB Shared Resource makes large datasets and multigenerational pedigrees available, while carefully protecting the privacy of individual-level data. All projects require IRB approval. In addition, the Utah Resource for Genetic and Epidemiology Research administers access to UPDB through another review process. UPDB is a focal point of transdisciplinary and collaborative cancer research, since gene discovery involves both basic and clinical researchers. Investigators from multiple Huntsman Cancer Institute Programs and many University departments use the UPDB. The UPDB is the only such database in the United States and one of few such resources in the world. Geraldine Mineau, PhD, has directed the UPDB since 1994. UPDB is a Cancer Center-managed facility with supervision from HCI Directors. There is a Faculty Advisory Committee; a survey has been used to assess user satisfaction. UPDB is located in Cancer Center space with ready access to investigators. In 2008, 45 percent of UPDB usage was by members with peer-reviewed funding. Funds are requested from the CCSG to cover 10 percent ($139,875) of the proposed UPDB budget.

犹他州人口数据库(UPDB)保存了大约1200万条记录，其中有一套广泛的 犹他州的家谱与大量的医疗记录(包括癌症记录)和其他类型的数据相关联。 它支持90多个研究项目，是遗传学、流行病学、 人口统计学和公共卫生研究。除了来自犹他州的家谱和癌症登记数据外， 爱达荷州的UPDB与住院记录和生命记录有关，包括犹他州的死亡证明。这些 数据可以识别癌症的家族聚集性。研究可能会有一种研究设计 纳入亲属/血统结构或采用病例对照结果方法。软件已经被 为研究人员提供有关癌症风险、隔离模式和 血统大小。 UPDB共享资源的目标是做以下工作： ？通过每年更新和链接全州记录，维护UPDB研究基础设施，包括 癌症、生命记录、驾照数据和住院事件 ？促进访问犹他大学企业数据仓库中的医疗信息 健康科学中心和山间医疗保健以及犹他州卫生局 ？维护血统基础设施和分析工具 ？提供利用UPDB支持研究项目的渠道和专业知识 ？向研究项目提供持续的信息，如死亡和癌症复发 这些活动需要超出任何单一研究项目范围的资源。UPDB共享 资源使大型数据集和多代谱系可用，同时小心地保护 个人级别数据的隐私。所有项目都需要IRB的批准。此外，犹他州遗传资源 流行病学研究通过另一个审查程序管理对UPDB的访问。 UPDB是跨学科和协作癌症研究的焦点，因为基因发现涉及 包括基础和临床研究人员。来自多个亨斯迈癌症研究所项目和 许多大学部门使用UPDB。UPDB是美国唯一的这样的数据库， 这是世界上为数不多的此类资源之一。 Geraldine Mineau博士自1994年以来一直领导UPDB。UPDB是一家由癌症中心管理的机构， 来自人机界面主管的监督。有一个学院咨询委员会；一项调查被用来评估 用户满意度。UPDB位于癌症中心空间，随时可以接触到调查人员。2008年，45 UPDB使用的百分比是由拥有同行审查资金的成员使用的。向CCSG申请资金 以支付UPDB拟议预算的10%(139,875美元)。