INTRODUCTION The ROADMAP project aimed to provide an integrated overview of European real-world data on Alzheimer's disease (AD) across the disease spectrum. METHODS Metadata were identified from data sources in catalogs of European AD projects. Priority outcomes for different stakeholders were identified through systematic literature review, patient and public consultations, and stakeholder surveys. RESULTS Information about 66 data sources and 13 outcome domains were integrated into a Data Cube. Gap analysis identified cognitive ability, functional ability/independence, behavioral/neuropsychiatric symptoms, treatment, comorbidities, and mortality as the outcomes collected most. Data were most lacking in caregiver-related outcomes. In general, electronic health records covered a broader, less detailed data spectrum than research cohorts. DISCUSSION This integrated real-world AD data overview provides an intuitive visual model that facilitates initial assessment and identification of gaps in relevant outcomes data to inform future prospective data collection and matching of data sources and outcomes against research protocols.

中文翻译：

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阿尔茨海默病的真实世界证据：ROADMAP 数据立方体

简介 ROADMAP 项目旨在提供欧洲阿尔茨海默氏病 (AD) 整个疾病谱系真实数据的综合概述。方法 元数据是从欧洲 AD 项目目录中的数据源中确定的。通过系统文献综述、患者和公众咨询以及利益相关者调查，确定了不同利益相关者的优先结果。结果 有关 66 个数据源和 13 个结果域的信息被集成到数据立方体中。差距分析将认知能力、功能能力/独立性、行为/神经精神症状、治疗、合并症和死亡率确定为收集最多的结果。最缺乏与护理人员相关的结果的数据。一般来说，电子健康记录涵盖的数据范围比研究队列更广泛，但不太详细。讨论 这种集成的现实世界 AD 数据概述提供了直观的可视化模型，有助于初步评估和识别相关结果数据中的差距，为未来的前瞻性数据收集以及数据源和结果与研究方案的匹配提供信息。