St. Michael's Hospital, University of Toronto, Toronto, ON, Canada,
Transl Stroke Res. 2013 Jun;4(3):286-96. doi: 10.1007/s12975-012-0242-1. Epub 2013 Jan 7.
Outcome of patients with aneurysmal subarachnoid hemorrhage (SAH) has improved over the last decades. Yet, case fatality remains nearly 40% and survivors often have permanent neurological, cognitive and/or behavioural sequelae. Other than nimodipine drug or clinical trials have not consistently improved outcome. We formed a collaboration of SAH investigators to create a resource for prognostic analysis and for studies aimed at optimizing the design and analysis of phase 3 trials in aneurysmal SAH. We identified investigators with data from randomized, clinical trials of patients with aneurysmal SAH or prospectively collected single- or multicentre databases of aneurysmal SAH patients. Data are being collected and proposals to use the data and to design future phase 3 clinical trials are being discussed. This paper reviews some issues discussed at the first meeting of the SAH international trialists (SAHIT) repository meeting. Investigators contributed or have agreed to contribute data from several phase 3 trials including the tirilazad trials, intraoperative hypothermia for aneurysmal SAH trial, nicardipine clinical trials, international subarachnoid aneurysm trial, intravenous magnesium sulphate for aneurysmal SAH, magnesium for aneurysmal SAH and from prospectively-collected data from four institutions. The number of patients should reach 15,000. Some industry investigators refused to provide data and others reported that their institutional research ethics boards would not permit even deidentified or anonymized data to be included. Others reported conflict of interest that prevented them from submitting data. The problems with merging data were related to lack of common definitions and coding of variables, differences in outcome scales used, and times of assessment. Some questions for investigation that arose are discussed. SAHIT demonstrates the possibility of SAH investigators to contribute data for collaborative research. The problems are similar to those already documented in other similar collaborative efforts such as in head injury research. We encourage clinical trial and registry investigators to contact us and participate in SAHIT. Key issues moving forward will be to use common definitions (common data elements), outcomes analysis, and to prioritize research questions, among others.
过去几十年来,患有蛛网膜下腔出血 (SAH) 的患者的预后已得到改善。然而,病死率仍接近 40%,幸存者常伴有永久性神经、认知和/或行为后遗症。除尼莫地平药物或临床试验外,其他方法并未一致改善预后。我们组织了一个由 SAH 研究者组成的合作团队,为预后分析以及旨在优化 3 期临床试验设计和分析的研究创建了一个资源。我们确定了来自随机、临床试验或前瞻性收集的单中心或多中心 SAH 患者数据库的研究者的数据。正在收集数据,并正在讨论使用这些数据和设计未来 3 期临床试验的提案。本文回顾了 SAH 国际试验者 (SAHIT) 存储库会议第一次会议上讨论的一些问题。研究者们已经或同意从几项 3 期临床试验中提供数据,其中包括替拉扎特试验、蛛网膜下腔出血术中低温试验、尼卡地平临床试验、国际蛛网膜下腔动脉瘤试验、静脉注射硫酸镁治疗蛛网膜下腔出血、镁治疗蛛网膜下腔出血,以及从四个机构前瞻性收集的数据。患者人数应达到 15000 人。一些行业研究者拒绝提供数据,而另一些则报告说,他们的机构研究伦理委员会甚至不允许包括去识别或匿名化的数据。其他人报告说存在利益冲突,阻止他们提交数据。合并数据的问题与缺乏共同定义和变量编码、使用的结果量表差异以及评估时间有关。讨论了出现的一些调查问题。SAHIT 表明 SAH 研究者有能力为合作研究提供数据。这些问题与其他类似合作研究(如颅脑损伤研究)中已经记录的问题相似。我们鼓励临床试验和登记处的调查人员与我们联系并参与 SAHIT。前进的关键问题将是使用共同定义(通用数据元素)、结果分析以及确定研究问题的优先级等。