ALZHEIMERS DISEASE DATA COORDINATING CENTER

与这些陈述的主要目标相关的目标是“能够解决重要的和新颖的研究问题，而这些问题是任何一个中心可用的资源都不可能解决的”，并且这些研究活动，使用数据协调中心的资源，“可以通过通常的NIH和其他联邦和非联邦来源为调查人员发起的申请提供资金支持”。我们已将所述目标重组为我们拟议的阿尔茨海默病数据协调中心的具体目标：1.迁移、继续数据流，并维护现有的最小数据集(MDS)，提供进入中心、安全和数据质量控制的手段；2.使用MDS数据建立一个辅助数据库，对参与ADC的组织和生物标本进行编目；描述可用标本的数量和类型，并促进研究人员之间的联系，同时保持数据的安全性和保密性；3.就最适合MDS和生物标本数据库的研究问题、研究设计和分析方法提供统计和流行病学咨询；4.促进发展局之间就“扩大”数据收集最能解决的研究问题进行合作研究：确保可行性研究的严格设计/分析标准；通过发展与发展中心与指导委员会合作，为可行性研究提供审查和资助的机制，以要求采用假设驱动的方法进行“扩大”、回顾和前瞻性的数据收集；根据指导委员会与发展局董事的决定，为重要或新的研究问题制定设计和分析；5.参与扩大对发展局(或联合体)倡议的成功可行性研究，这些计划将由其他方式提供资金；就这些研究的设计和分析提供咨询，以便在必要和可行的情况下为这些研究提供“核心”统计和数据库功能。

The goal associated with these stated primary objectives is that "important and novel research issues can be addressed which would not be possible with the resources available at any one center" and that these research activities, using the resources of the data coordination center, "may be supported through the usual NIH and other federal and non-federal sources for funding investigator initiated applications". We have re-structured the stated objectives into Specific Aims for our proposed Alzheimer's Disease Data Coordinating Center: 1. To migrate, continue data flow, and maintain the existing Minimum Data Set (MDS) providing means of access to the centers, security and data quality control; 2. To use the MDS data to establish an auxiliary database which catalogs tissues and biological specimens available at participating ADCs; to describe numbers and types of specimens available and facilitate contact between investigators while maintaining data security and confidentiality; 3. To provide statistical and epidemiologic consulting concerning research questions, study designs, and analytic methods best suited to the MDS and the biologic specimen database; 4. To foster collaborative research among ADCs for research questions best addressed by "expanded" data collection: to insure rigorous design/analysis standards for feasibility studies; to provide a mechanism for review and funding of Feasibility studies through the ADDCC in conjunction with the Steering Committee to require a hypothesis-driven approach to "expanded", retrospective and prospective data collection; to formulate designs and analyses for important or novel research questions, as determined by the Steering Committee in conjunction with the ADC directors; 5. To participate in the expansion of successful feasibility studies toward ADC-wide (or consortium) initiatives which would be funded by other means; to provide consultation on the design and analysis of those studies to provide, as needed and as feasible, the 'core' statistical and database functions for those studies.