National Alzheimer's Coordinating Center

描述(由申请人提供)：国家阿尔茨海默氏症协调中心(http://www.alz.washington.edu))成立于1999年，旨在促进自1984年以来由国家阿尔茨海默氏症协调中心计划独立资助的阿尔茨海默病中心之间的合作研究。在其发展的最初阶段，NACC收集了自1984年以来在ADC登记的受试者的临床数据的“最小数据集(MDS)”。然后在2005年，通过与NIA和ADC临床工作组的密切合作，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)；其方案要求每年进行跟踪检查，以监测患者和正常对照组随着时间的变化。到目前为止，约有66,000人被纳入MDS，29,000人被纳入UDS(有些人每年进行长达7次的跟踪访问)。在MDS和UDS中，总共有大约13,000人死亡，并进行了尸检，以确定其病情的病理基础。所有这些数据都是由国家反腐败委员会收集的，保存在国家反腐败委员会的数据库中。研究人员可以根据要求免费获得这些数据。2009-14年度赠款周期内出版了306份出版物。NACC与ADC CTF和每个中心密切合作，为所有数据收集开发临床表格和文档。我们已经成为ADC计划不可或缺的一部分，不仅收集注册数据和监测ADC的进展，而且还为科学界提供一个庞大和无与伦比的研究数据库。我们现在申请将NACC的努力再继续五年。在此期间，我们将：a.)保持和提高研究能力 通过增加改进的诊断数据，并在得到CTF和NIA批准的情况下，增加疾病具体模块以及成像和其他生物标记物数据，从而对NACC数据库进行管理。多年来，我们一直保持较高的数据质量标准，并将通过一个详细的数据库差错检查系统和与各中心的沟通，继续这样做。B.)通过向调查人员提供数据和咨询；每年向几个项目提供有竞争力的同行评审资金；以及进行内部应用和理论研究，促进和使用国家反腐败委员会的数据进行研究。C.)与阿尔茨海默病遗传学联合会等治疗阿尔茨海默病和其他痴呆症的国家和国际努力合作，并向世界各地的非ADC研究人员提供UDS和其他仪器。D.)继续按照NIA的要求对ADC会议和ADC通信进行行政协调。

DESCRIPTION (provided by applicant): 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.