Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
Synapse Research Management Partners SL, Madrid, Spain.
Alzheimers Dement. 2020 Mar;16(3):461-471. doi: 10.1016/j.jalz.2019.09.087. Epub 2020 Jan 6.
The ROADMAP project aimed to provide an integrated overview of European real-world data on Alzheimer's disease (AD) across the disease spectrum.
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.
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.
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.
ROADMAP 项目旨在提供欧洲阿尔茨海默病（AD）疾病谱的真实世界数据的综合概述。
从欧洲 AD 项目目录中的数据源中确定元数据。通过系统文献回顾、患者和公众咨询以及利益相关者调查确定不同利益相关者的优先结果。
将 66 个数据源和 13 个结果域的信息整合到一个数据立方体中。差距分析确定认知能力、功能能力/独立性、行为/神经精神症状、治疗、合并症和死亡率是最常收集的结果。与护理人员相关的结果数据最缺乏。一般来说，电子健康记录涵盖的范围更广，但数据细节较少，而研究队列则涵盖的范围较窄，但数据细节较丰富。
这种综合的真实世界 AD 数据概述提供了直观的可视化模型，有助于对相关结果数据的初步评估和差距识别，以告知未来前瞻性数据收集以及根据研究方案匹配数据源和结果。
Zotero 插件