National Alzheimer's Coordinating Center

国家阿尔茨海默病协调中心

• 批准号: 9812704
• 负责人: Walter Anthony Kukull
• 金额: $ 389.93万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-07-01 至 2020-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9812704
• 关键词: Address; Administrative Coordination; Advisory Committees; Alzheimer' s Disease; Autopsy; Biological Assay; Biological Markers; Clinical; Clinical Data; Clinical Research; Collaborations; Communication; Communities; Consultations; Data; Data Collection; Data Coordinating Center; Data Element; Data Quality; Data Set; Data Storage and Retrieval; Database Management Systems; Databases; Dementia; Development; Diagnosis; Diagnostic; Disease; Documentation; Enrollment; Expressed Sequence Tags; Family; Frontotemporal Lobar Degenerations; Funding; Future; Genetic Diseases; Grant; Image; International; Lewy Body Dementia; Magnetic Resonance Imaging; Methodology; Monitor; National Institute on Aging; Pathologic; Patients; Peer Review; Persons; Phase; Process; Productivity; Protocols documentation; Public Health; Publications; Research; Research Methodology; Research Personnel; Sampling; Site; Standardization; Structure; System; Testing; Time; Trust; Visit; Washington; Work; base; data access; data sharing; data submission; data warehouse; follow-up; high standard; imaging biomarker; innovation; instrument; meetings; method development; neuropathology; pre-clinical; programs; ranpirnase; relational database; research clinical testing

Project summary/abstract The National Alzheimer's Coordinating Center (NACC) (http://www.alz.washington.edu) was begun in 1999 to facilitate collaborative research among the Alzheimer's Disease Centers funded independently by NIA as the Alzheimer's Disease Centers Program since 1984. During the initial phase of its development, NACC collected a “minimal data set (MDS)” of clinical data on the subjects who had been enrolled at ADCs since 1984. Then in 2005, through close collaboration with NIA and the ADC Clinical Task Force, a detailed clinical evaluation and data-collection system was implemented called the Uniform Data Set (UDS); its protocol required annual follow-up examinations to monitor change over time in the patients and normal controls. About 66,000 persons were included in the MDS and 29,000 so far in the UDS (some with up to seven annual follow-up visits). From the MDS and UDS there is a total of about 13,000 persons who have died and had an autopsy to determine pathologic basis for their condition. All of these data have been collected by NACC and are housed in the NACC database. The data are freely available to researchers on request. There have been 306 publications within the 2009 – 14 grant cycle. NACC develops the clinical forms and documentation for all the data collection, working closely with the ADC CTF and with each Center. We have become an integral part of the ADC Program, not only to collect enrollment data and monitor ADC progress, but also to provide a large and unparalleled research database to the scientific community. We are now applying to continue NACC's efforts for another five years. During that time we will: a.) Maintain and increase the research capability of the NACC database by adding refined diagnostic data and, as it is approved by the CTF and NIA, disease specific modules as well as imaging and other biomarker data. We have maintained high data quality standards over the years and will continue to do so, through a detailed system of database error checks and communication with the Centers. b.) Facilitate and conduct research using NACC data by providing data and consultation to investigators; providing competitive peer-reviewed funding to several projects per year; and conducting internal applied and theoretical research. c.) Collaborate with national and international efforts on AD and other dementias, such as the Alzheimer's Disease Genetics Consortium, and make the UDS and other instruments available to non-ADC researchers anywhere in the world. d.) Continue the NIA-required administrative coordination of ADC meetings and ADC communications.

项目摘要/摘要 国家阿尔茨海默氏症协调中心(http://www.alz.washington.edu))成立于1999年，旨在促进 由NIA独立资助的阿尔茨海默病中心作为阿尔茨海默病的合作研究 中心计划自1984年开始。在其开发的初始阶段，NACC收集了 1984年以来在ADC登记的受试者的临床资料。然后在2005年，通过与 NIA和ADC临床工作组，实施了一个详细的临床评估和数据收集系统，称为 统一数据集(UDS)；其议定书要求每年进行后续检查，以监测一段时间以来 患者和正常对照组。大约66,000人被纳入MDS，到目前为止29,000人被纳入UDS(有些人 最多七次年度跟踪访问)。从MDS和UDS来看，总共有大约13,000人死亡， 进行了尸检以确定他们病情的病理基础。所有这些数据都是由NACC收集的 保存在NACC数据库中。研究人员可以根据要求免费获得这些数据。已经有306种出版物 在2009-14年度赠款周期内。NACC为所有数据收集开发临床表格和文档， 与ADC CTF和每个中心密切合作。我们已成为ADC计划不可或缺的一部分，而不是 不仅收集招生数据和监控ADC进度，还提供一个庞大和无与伦比的研究数据库 向科学界致敬。我们现在申请将NACC的努力再继续五年。在那段时间里我们 将： A.)通过添加改进的诊断数据并按原样增加NACC数据库的研究能力，维护和提高NACC数据库的研究能力 由CTF和NIA批准的疾病特定模块以及成像和其他生物标记物数据。我们有 多年来一直保持较高的数据质量标准，并将通过详细的数据库系统继续保持这一标准 错误检查和与中心的沟通。 B.)通过向调查人员提供数据和咨询，促进和开展使用NACC数据的研究；提供 每年为几个项目提供竞争性同行评审资金；进行内部应用和理论研究 研究。 C.)与国家和国际合作应对阿尔茨海默病等老年痴呆症和其他痴呆症 遗传学联盟，并使UDS和其他仪器可供世界各地的非ADC研究人员使用 世界。 D.)继续按照NIA的要求对ADC会议和ADC通信进行行政协调。