AMP-AD Data Coordination Center Supplement - Lowering Barriers of Access and Use: Framingham Generation 1 Brain Aging Data

通过降低门槛来加速阿尔茨海默病的创新和发现 弗雷明翰认知老化和痴呆症数据 弗雷明翰心脏研究(FHS)始于1948年，最初的第一代(Gen 1)队列。这一群人 多年来接受了32次定期健康检查，其中许多并存的特征和风险 因素(例如，人口、健康、生活方式、社会网络、遗传/基因组、血清和血浆生物标记物) 与未来患痴呆症/阿尔茨海默病(AD)的风险有关。此外，监测痴呆症/AD事件 自1976年以来一直在进行。然而，数据的复杂状态导致了丰富的数据集 使用不符合当今公平数据原则的传播协议(可查找、可访问、 可互操作、可重用)。拟议的补编旨在使FHS的数据共享流程现代化 大脑健康数据，以满足AMP-AD和其他大脑研究人员重复使用的必要标准。为了满足这一点 数据共享目标，我们将准备一个主大脑健康数据集，其中包括所有编码程序和 处理原始数据并将其转换为更易于分析的数据所需的增强数据字典 格式化。我们将使用AMP-AD知识门户广泛分发编码程序和 理解和准备FHS数据以进行分析所需的文档，从而消除多余的工作 研究人员试图使用FHS数据，特别是第一次。我们还将寻求替代云- 基于与FHS和NHLBI协商的战略。

Accelerating Alzheimer’s Disease Innovation and Discovery by Lowering Barriers to Framingham Cognitive Aging and Dementia Data The Framingham Heart Study (FHS) started in 1948 with the Original Generation 1 (Gen 1) cohort. This cohort has undergone 32 regular health examinations over 64 years in which many co-morbid features and risk factors (e.g., demographic, health, lifestyle, social networks, genetic/genomic, serum and plasma biomarkers) linked to future risk of dementia/Alzheimer’s disease (AD). Additionally, surveillance for incident dementia/AD has been underway since 1976. However, the complicated state of the data has resulted in a rich data set that uses a dissemination protocol that does not meet today’s principles for FAIR data (Findable, Accessible, Interoperable, Reusable). The proposed supplement seeks to modernize the data sharing process for the FHS brain health data to meet necessary standards for reuse by AMP-AD and other brain researchers. To meet this data sharing objective, we will prepare a master brain health dataset that includes all the coding programs and enhanced data dictionary necessary to process the raw data and convert into a more readily analyzable format. We will use the AMP-AD Knowledge Portal to broadly distribute the coding programs and documentation needed to understand and prepare FHS data for analysis, thereby eliminating redundant effort by researchers trying to use FHS data, particularly for the first time. We will also pursue alternative cloud- based strategies in consultation with FHS and the NHLBI.