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（NACC）（http：www.alz.washington.edu）成立于1999年，以促进自1984年以来由NIA独立资助的阿尔茨海默氏症中心之间的合作研究。在其开发的初始阶段，NACC收集了自1984年以来在ADC招募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）;其协议要求每年进行随访检查，以监测患者和正常对照组随时间的变化。大约66 000人被纳入MDS，迄今为止有29 000人被纳入UDS（有些人每年进行多达7次随访）。根据MDS和UDS，共有约13，000人死亡，并进行了尸检，以确定其病情的病理基础。所有这些数据都由NACC收集并存放在NACC数据库中。研究人员可应要求免费获得这些数据。在2009 - 2014年赠款周期内有306份出版物。NACC与ADC CTF和每个中心密切合作，为所有数据收集制定临床表格和文件。我们已经成为ADC计划的一个组成部分，不仅收集招生数据和监测ADC的进展，而且还提供了一个巨大的和无与伦比的研究数据库，以科学界。我们现在正在申请将NACC的努力再持续五年。在此期间，我们将：）保持和提高研究能力 通过添加精细的诊断数据以及CTF和NIA批准的疾病特异性模块以及成像和其他生物标志物数据，对NACC数据库进行改进。多年来，我们一直保持高数据质量标准，并将继续这样做，通过一个详细的系统，数据库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;每年为几个项目提供竞争性同行评审资金;并进行内部应用和理论研究。c.）与阿尔茨海默病和其他痴呆症的国家和国际努力合作，如阿尔茨海默病遗传学联盟，并使UDS和其他工具可供世界任何地方的非ADC研究人员使用。d.）继续进行国家情报局要求的ADC会议和ADC通信的行政协调。

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.