Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube
Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube
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DOI：
10.1016/j.jalz.2019.09.087
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发表时间：
2020-03-01
影响因子：
14
通讯作者：
Diaz, Carlos
中科院分区：
文献类型：
--
作者：
Janssen, Olin;Vos, Stephanie J. B.;Diaz, Carlos
简介：路线图项目旨在提供欧洲阿尔茨海默病（AD）全疾病谱真实数据的综合概述。方法：从欧洲AD项目目录中的数据源中识别元数据。通过系统的文献综述、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：66个数据源和13个结果域的信息被整合到一个数据立方体中。差距分析发现认知能力、功能能力/独立性、行为/神经精神症状、治疗、合并症和死亡率是收集到的最多的结果。与护理人员相关的结果最缺乏数据。总的来说，电子健康记录涵盖的数据范围比研究群组更广泛，但不那么详细。讨论：这一整合的真实世界AD数据概述提供了一个直观的可视化模型，有助于初步评估和识别相关结果数据中的差距，从而为未来的前瞻性数据收集提供信息，并根据研究方案匹配数据源和结果。
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.