Butzkueven H, Chapman J, Cristiano E, Grand'Maison F, Hoffmann M, Izquierdo G, Jolley D, Kappos L, Leist T, Pöhlau D, Rivera V, Trojano M, Verheul F, Malkowski J P
Department of Neurology, Royal Melbourne Hospital, Parkville 3050, Victoria, Australia.
Mult Scler. 2006 Dec;12(6):769-74. doi: 10.1177/1352458506070775.
Observational cohort studies are a powerful tool to assess the long-term outcome in chronic diseases. This study design has been utilized in local and regional outcome studies in multiple sclerosis (MS) and has yielded invaluable epidemiological information. The World Wide Web now provides an excellent opportunity for an international, collaborative cohort study of MS outcomes. A web platform--MSBase--has been designed to collect prospective data on patients with MS. It is purely observational, enabling participating neurologists to contribute data on diagnosis, treatment and progress, to review anonymous aggregate data and to benchmark their patient population against other patient subsets or the entire dataset. MSBase facilitates collaborative research by allowing the online creation of investigator-initiated regional, national and international substudies. The registry aims to answer epidemiological questions that can only be addressed by prospective assessments of large patient cohorts. The registry is funded through the independent MSBase Foundation, and governed by an International Scientific Advisory Board. The MSBase Foundation commenced operations in July 2004 and since then, 22 neurologists from 11 countries have joined MSBase and are contributing 2400 patients to the total data pool.
观察性队列研究是评估慢性病长期预后的有力工具。这种研究设计已被用于多发性硬化症(MS)的本地和区域预后研究,并产生了宝贵的流行病学信息。万维网现在为MS预后的国际合作队列研究提供了绝佳机会。一个网络平台——MSBase——已被设计用于收集MS患者的前瞻性数据。它完全是观察性的,使参与的神经科医生能够提供有关诊断、治疗和病情进展的数据,查看匿名汇总数据,并将其患者群体与其他患者子集或整个数据集进行对比。MSBase通过允许在线创建研究者发起的区域、国家和国际子研究来促进合作研究。该注册库旨在回答只有通过对大型患者队列进行前瞻性评估才能解决的流行病学问题。该注册库由独立的MSBase基金会资助,并由一个国际科学咨询委员会管理。MSBase基金会于2004年7月开始运作,从那时起,来自11个国家的22名神经科医生加入了MSBase,并为总数据库贡献了2400名患者的数据。