National Multiple Sclerosis Society, New York, NY, USA.
Mellen Center for Multiple Sclerosis, Cleveland Clinic, Cleveland, OH, USA.
Mult Scler. 2018 Apr;24(5):579-586. doi: 10.1177/1352458517698250. Epub 2017 Mar 1.
There is a growing number of cohorts and registries collecting phenotypic and genotypic data from groups of multiple sclerosis patients. Improved awareness and better coordination of these efforts is needed.
The purpose of this report is to provide a global landscape of the major longitudinal MS patient data collection efforts and share recommendations for increasing their impact.
A workshop that included over 50 MS research and clinical experts from both academia and industry was convened to evaluate how current and future MS cohorts could be better used to provide answers to urgent questions about progressive MS.
The landscape analysis revealed a significant number of largely uncoordinated parallel studies. Strategic oversight and direction is needed to streamline and leverage existing and future efforts. A number of recommendations for enhancing these efforts were developed.
Better coordination, increased leverage of evolving technology, cohort designs that focus on the most important unanswered questions, improved access, and more sustained funding will be needed to close the gaps in our understanding of progressive MS and accelerate the development of effective therapies.
越来越多的队列研究和登记处正在从多发性硬化症患者群体中收集表型和基因型数据。需要提高对这些工作的认识并更好地协调这些工作。
本报告旨在提供多发性硬化症患者主要纵向数据收集工作的全球概况，并分享增加其影响力的建议。
召集了来自学术界和工业界的 50 多名多发性硬化症研究和临床专家参加研讨会，以评估如何更好地利用当前和未来的多发性硬化症队列研究来回答有关进行性多发性硬化症的紧迫问题。
景观分析显示，大量的平行研究缺乏协调。需要进行战略监督和指导，以简化和利用现有的和未来的工作。为加强这些工作提出了一些建议。
为了缩小我们对进行性多发性硬化症认识的差距并加速有效治疗方法的开发，需要更好的协调、更多地利用不断发展的技术、专注于最重要的未解决问题的队列设计、更好的可及性和更持续的资金。
