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Utah Population Database (UPDB)

犹他州人口数据库 (UPDB)

基本信息

批准号：
10611309
负责人：
NICOLA J. CAMP
金额：
$ 57.14万
依托单位：
UNIVERSITY OF UTAH
依托单位国家：
美国
项目类别：
财政年份：
1997
资助国家：
美国
起止时间：
1997-05-09 至 2025-04-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10611309
关键词：
APC gene Address Area Behavior Behavioral Behavioral Research Biomedical Research Cancer Center Cancer Center Support Grant Cancer Etiology Cancer Family Cancer Patient Caring Catchment Area Censuses Chromosome Mapping Clinic Clinical Investigator Clinical Trials Collaborations Community Outreach Complex Computerized Medical Record Creativeness DNA Sequence Alteration Data Data Analyses Data Set Data Sources Databases Discipline Disease Doctor of Philosophy Emergency department visit Ensure Epidemiology Evaluation Exposure to Faculty Familial Adenomatous Polyposis Syndrome Family Family Study Family history of Funding Genealogy Generations Genes Genetic Geography Grant Guidelines Health Health Services Research Healthcare High-Risk Cancer Human Incidence Individual Infrastructure Institutional Review Boards Investigation Link Malignant Neoplasms Manuscripts Medical Medical Records Medicare Mission Molecular Genetics NCI Center for Cancer Research National Cancer Institute Oncogenes Outcome Study Pattern Peer Review Population Population Analysis Population Database Population Study Predisposition Preparation Prevention Preventive Productivity Protocols documentation Public Health Publications Quality Control Records Research Research Design Research Personnel Research Project Grants Resource Sharing Resources Risk Assessment SEER Program Science Secure Services Source Techniques Translations United States Universities Utah Work Writing advanced analytics analytical tool anticancer research community engagement complex data cost cost effective data quality data resource data sharing networks data tools data warehouse design epidemiology study gene discovery genetic linkage genetic pedigree genetic testing human disease improved kindred malignant breast neoplasm member neoplasm registry novel privacy protection racial diversity recruit

项目摘要

UTAH POPULATION DATABASE SHARED RESOURCE ABSTRACT The Utah Population Database Shared Resource (UPDB), established at Huntsman Cancer Institute (HCI) in 1994, contributes to HCI’s mission by providing state-of-the-art data and analytic services to support genetic, epidemiologic, demographic, public health, behavioral, and health services research. UPDB provides privacy- protected access to unique data sets derived from one of the world’s richest sources of linked individual-level genealogical, medical, vital, and geospatial information, enabling diverse biomedical investigations, including statewide population analyses. The data include over 11 million individuals linked into pedigrees covering up to 17 generations. UPDB’s aims are 1) to assemble state-of-the-art integrated genealogical, medical, and vital records and provide data analysis and interpretation for cancer investigations; and 2) to support the scientific research objectives of the Cancer Center by providing access to tailored complex data sets and advanced analytic tools. UPDB has been directed by Ken Smith, PhD, since 2010. Management of UPDB within the Cancer Center ensures that this Resource addresses the needs of Cancer Center members. The services provided by UPDB are unique and do not exist at any other National Cancer Institute cancer center. UPDB adds value to cancer research by: 1) providing data and analytic tools to identify high-risk cancer families, 2) adding extensive geospatial information that permits linkages to environmental variables, and 3) offering guidelines for the efficient and cost-effective recruitment of subjects into research projects. UPDB infrastructure enables Cancer Center members to exploit otherwise unavailable key data resources, including the University of Utah Health and Intermountain Healthcare data warehouses. Cancer Center members with peer-reviewed funding comprise 11% of the users, and total cancer-related usage exceeds 48%. Since 2014, UPDB data have been used in 61 cancer-focused, Institutional Review Board (IRB)-approved projects that have yielded 118 publications. UPDB is an unparalleled biomedical research resource. It provides outstanding data quality on large multi- generational pedigrees, linked to the Surveillance, Epidemiology, and End Results (SEER) Utah Cancer Registry and most of the state’s electronic medical records. The data in UPDB span decades and are enhanced by other high-quality databases and geocodes, exposed to rigorous data quality control techniques, and made available to Cancer Center members with IRB-approved protocols at a reasonable cost. UPDB enhances the productivity and creativity of HCI’s members and contributes to the Cancer Center’s overall mission to understand the causes of cancer and promote its prevention within HCI’s catchment area, the State of Utah.

犹他州人口数据库共享资源抽象的犹他州人口数据库共享资源 (UPDB)，于 2017 年在亨茨曼癌症研究所 (HCI) 建立 1994 年，通过提供最先进的数据和分析服务来支持遗传、流行病学、人口统计、公共卫生、行为和卫生服务研究。 UPDB 提供隐私- 受保护地访问源自世界上最丰富的关联个人级别来源之一的独特数据集家谱、医学、生命和地理空间信息，支持多种生物医学研究，包括全州人口分析。这些数据包括超过 1100 万人，其血统涵盖多达 17代。 UPDB 的目标是 1) 整合最先进的综合系谱、医学和生命科学记录并为癌症调查提供数据分析和解释； 2）支持科学癌症中心的研究目标是通过提供定制的复杂数据集和先进的分析工具。自 2010 年起，UPDB 一直由 Ken Smith 博士领导。UPDB 的管理癌症中心确保该资源满足癌症中心成员的需求。服务 UPDB 提供的服务是独一无二的，任何其他国家癌症研究所癌症中心都不存在。 UPDB 通过以下方式为癌症研究增加价值：1) 提供数据和分析工具来识别高风险癌症家庭，2) 添加广泛的地理空间信息，允许与环境变量的联系，以及 3) 为研究项目中有效且具有成本效益的受试者招募提供指导。统一数据库基础设施使癌症中心成员能够利用其他方式无法获得的关键数据资源，包括犹他大学健康中心和 Intermountain Healthcare 数据仓库。癌症中心成员同行评审资金占用户的 11%，与癌症相关的总使用量超过 48%。自2014年以来， UPDB 数据已用于 61 个以癌症为重点、经机构审查委员会 (IRB) 批准的项目，这些项目已发表 118 篇出版物。 UPDB 是无与伦比的生物医学研究资源。它在大型多点数据上提供出色的数据质量世代谱系，与犹他州癌症监测、流行病学和最终结果 (SEER) 相关登记处和大多数州的电子病历。 UPDB 中的数据跨度数十年，通过其他高质量数据库和地理编码增强，并采用严格的数据质量控制技术，并以合理的费用向癌症中心成员提供 IRB 批准的方案。统一数据库提高 HCI 成员的生产力和创造力，并为癌症中心的整体贡献其使命是了解癌症的原因并在 HCI 的服务范围内促进其预防，该州犹他州。