NATIONAL ALZHEIMERS COORDINATING CENTER (NACC)

描述（由申请人提供）：这是国家阿尔茨海默氏症协调中心（NACC）的竞争延续申请。大约在1984年至1997年之间，没有集中收集由国家老龄化研究所资助的29个阿尔茨海默病中心（ADC）的数据。大约在1997年建立了临时数据中心和最小数据集，导致NIA为阿尔茨海默病数据协调中心发布了RFA。自收到临时中心最小数据集（MDS）以来，NACC已成功完善和扩展了整体数据库，减少了缺失数据，提高了数据有效性，扩展了神经病理学数据，增加了中心范围的数据调查，并通过使用基于网络的数据访问和输入增加了数据的可访问性。在建立NACC之前，ADC尚未体验到为使用合并ADC数据而提供的能力。拥有超过60，000名受试者，这是目前美国有史以来最大的阿尔茨海默氏症和相关疾病数据库。 国家统计协调委员会还负责加强发展协调委员会之间的合作，不仅通过使用数据管理系统，而且通过促进协调员发起的合作项目，并向发展协调委员会和合作项目提供统计、方法和数据库管理咨询。在下一个赠款周期，国家儿童基金会将继续扩大这些努力。统一数据集（UDS）现已被NIA强制要求在所有ADC中使用。NACC将建立一个数据库结构，以实施UDS，收集数据并将其与现有数据无缝集成。NACC将为所有新的UDS注册者开发一种获取转介来源和选择方法数据的方法。这些数据将有助于描述和增加使用数据库的分析的外部有效性，并将构成ADC为其病例选择最具可比性的对照的基础。NACC将继续其成功的合作项目计划，并鼓励初级研究人员进行小型二级数据分析研究。NACC将继续提供设计和分析咨询，并通过NACC网站扩大其努力，以增加沟通与合作。国家咨询委员会还将进行自己的数据分析，并开展与发展合作委员会的需要和一般研究有关的方法研究。最后，国家协调委员会将继续其行政协调活动，以促进发展局局长和核心领导人的会议。

DESCRIPTION (provided by applicant): This is the Competing Continuation application of the National Alzheimer's Coordinating Center (NACC). Between about 1984 and 1997, no data were centrally collected for the 29 Alzheimer's Disease Centers (ADCs) funded by the National Institute on Aging. Establishment of an interim data center and a Minimum Data Set in about 1997 led to the NIA issuance of an RFA for an Alzheimer's Disease Data Coordinating Center. Since receiving the interim center Minimum Data Set (MDS), NACC has successfully refined and expanded the overall database, reduced missing data, increased data validity, expanded neuropathological data, added Center-wide data surveys, and increased accessibility to the data through the use of web-based data access and entry. The capabilities provided for use of combined ADC data have not been experienced by the ADCs prior to the establishment of NACC. With over 60,000 subjects, this is currently the largest Alzheimer's and related disorders database ever assembled in the U.S. NACC was additionally charged with increasing collaboration between the ADCs, not only through the use of the MDS but also through the promotion of investigator-initiated collaborative projects and the provision of statistical, methodological and database management consulting to the ADCs and for the collaborative projects. In the next grant cycle, NACC will continue to expand on these efforts. The Uniform Data Set (UDS) has now been mandated for use in all ADCs by NIA. NACC will build a database structure to implement the UDS, collect the data and integrate it seamlessly with the existing data. NACC will develop a means of capturing referral source and selection method data for all new UDS enrollees. These data will help describe and increase the external validity of analyses which use the database and will form the basis for ADCs to select the most comparable controls for their cases. NACC will continue its successful collaborative project program and will also encourage small secondary data analysis studies from junior investigators. NACC will continue design and analysis consulting, and expand its efforts to increase communication and collaboration through the NACC web site. NACC will also conduct its own data analyses and develop methodological research relevant to the needs of the ADCs and research in general. Finally, NACC will continue its administrative coordinating activities to facilitate meetings of the ADC Directors and Core Leaders.