CORE--DATABASE MANAGEMENT AND STATISTICS

核心——数据库管理与统计

• 批准号: 6798082
• 负责人: DAVID Alan SCHOENFELD
• 金额: $ 9.88万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-04-01 至 2009-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6798082
• 关键词: Alzheimer' s disease; biomedical facility; data collection methodology /evaluation; data management; dementia; information dissemination; mental health information system; patient /disease registry; statistical service /center; statistics /biometry

The Massachusetts ADRC established and maintains one of the oldest and most comprehensive clinical databases on AD and related dementias in the country. Its Data Management and Statistics Core was created to support the Center's mission of conducting innovative research on AD and related neurodegenerative disorders, and to sustain collaborative research efforts with other ADCs and national AD research initiatives. Its key personnel work cohesively to: Maintain the ADRC Patient Registry and Neuropathology Brain Registry to serve local ADRC and National Alzheimer's Coordinating Center (NACC) needs; Ensure a seamless transmission of clinical, laboratory and neuropathology data collected during Memory Disorders Unit (MDU) visits and autopsies to the ADRC database; Conduct accurate data entry monitored by computerized range checks and double-checking procedures; Guarantee data confidentiality in accordance with HIPAA (Health Insurance Portability and Accountability Act of 1996) and general patient privacy guidelines; Provide requested data to authorized investigators, both within the ADRC and (inter)nationally, in support of their research endeavors; Submit timely and accurate clinical and neuropathology data to the NACC; Deliver top-quality statistical consultation and execution to ADRC investigators in the various cores and affiliated research projects.

马萨诸塞州ADRC建立并维护了该国广告和相关痴呆症的最古老，最全面的临床数据库之一。它的数据管理和统计核心是为了支持该中心的使命，即对AD和相关神经退行性疾病进行创新研究，并与其他ADC和国家ADC和国家广告研究计划进行协作研究。它的关键人员会凝聚到： 维护ADRC患者登记和神经病理学脑注册表，以服务于当地ADRC和国家阿尔茨海默氏症协调中心（NACC）的需求；确保在记忆障碍单元（MDU）访问期间收集的临床，实验室和神经病理学数据无缝传输到ADRC数据库；通过计算机范围检查和双重检查程序进行准确的数据输入；根据HIPAA（1996年的健康保险和问责制法）和一般患者隐私准则，保证数据机密性；为ADRC和（国际）在全国范围内提供所请求的数据，以支持其研究努力；向NACC提交及时，准确的临床和神经病理学数据；向各种核心和附属研究项目中的ADRC调查人员提供高质量的统计咨询和执行。