多发性硬化症数据联盟——一项旨在扩大真实世界数据研究的全球多方利益相关者合作计划。
Multiple Sclerosis Data Alliance - A global multi-stakeholder collaboration to scale-up real world data research.
作者信息
Peeters Liesbet M, Parciak Tina, Kalra Dipak, Moreau Yves, Kasilingam Elisabeth, van Galen Pieter, Thalheim Christoph, Uitdehaag Bernard, Vermersch Patrick, Hellings Niels, Stinissen Piet, Van Wijmeersch Bart, Ardeshirdavani Amin, Pirmani Ashkan, De Brouwer Edward, Bauer Christian Robert, Krefting Dagmar, Ribbe Stephanie, Middleton Rod, Stahmann Alexander, Comi Giancarlo
机构信息
University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium; Data Science Institute (DSI), Hasselt University, Agoralaan Building D, 3590, Diepenbeek, Belgium.
Department of Medical Informatics, University Medical Center Göttingen, Von-Siebold-Straße 3, 37075, Göttingen, Germany.
出版信息
Mult Scler Relat Disord. 2021 Jan;47:102634. doi: 10.1016/j.msard.2020.102634. Epub 2020 Nov 21.
The Multiple Sclerosis Data Alliance (MSDA), a global multi-stakeholder collaboration, is working to accelerate research insights for innovative care and treatment for people with multiple sclerosis (MS) through better use of real-world data (RWD). Despite the increasing reliance on RWD, challenges and limitations complicate the generation, collection, and use of these data. MSDA aims to tackle sociological and technical challenges arising with scaling up RWD, specifically focused on MS data. MSDA envisions a patient-centred data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.
多发性硬化症数据联盟（MSDA）是一个全球多利益相关方合作组织，致力于通过更好地利用真实世界数据（RWD），加速对多发性硬化症（MS）患者的创新护理和治疗的研究洞察。尽管对真实世界数据的依赖日益增加，但这些数据的生成、收集和使用面临的挑战和限制使其变得复杂。MSDA旨在应对扩大真实世界数据规模时出现的社会学和技术挑战，特别关注MS数据。MSDA设想了一个以患者为中心的数据生态系统，所有利益相关方在其中贡献并使用大数据，共同创造推进MS患者及时治疗和护理所需的创新。
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