National Stroke Research Institute a subsidiary of Florey Neuroscience Institutes, Heidelberg Heights, Vic., Australia.
Int J Stroke. 2010 Jun;5(3):217-26. doi: 10.1111/j.1747-4949.2010.00430.x.
Disease registries assist with clinical practice improvement. The Australian Stroke Clinical Registry aims to provide national, prospective, systematic data on processes and outcomes for stroke. We describe the methods of establishment and initial experience of operation.
Australian Stroke Clinical Registry conforms to new national operating principles and technical standards for clinical quality registers. Features include: online data capture from acute public and private hospital sites; opt-out consent; expert consensus agreed core minimum dataset with standard definitions; outcomes assessed at 3 months poststroke; formal governance oversight; and formative evaluations for improvements.
Qualitative feedback from sites indicates that the web-tool is simple to use and the user manuals, data dictionary, and training are appropriate. However, sites desire automated data-entry methods for routine demography variables and the opt-out consent protocol has sometimes been problematic. Data from 204 patients (median age 71 years, 54% males, 60% Australian) were collected from four pilot hospitals from June to October 2009 (mean, 50 cases per month) including ischaemic stroke (in 72%), intracerebral haemorrhage (16%), transient ischaemic attack (9%), and undetermined (3%), with only one case opting out.
Australian Stroke Clinical Registry has been well established, but further refinements and broad roll-out are required before realising its potential of improving patient care through clinician feedback and allowance of local, national, and international comparative data.
疾病登记系统有助于改善临床实践。澳大利亚卒中临床登记处旨在为卒中的过程和结果提供全国性、前瞻性、系统性的数据。我们描述了建立和初步运作经验的方法。
澳大利亚卒中临床登记处符合新的国家临床质量登记操作原则和技术标准。其特点包括：从急性公立和私立医院现场在线捕获数据；选择退出同意；专家共识商定的核心最小数据集和标准定义；卒中后 3 个月评估结果；正式的治理监督；以及改进的形成性评估。
来自现场的定性反馈表明，网络工具易于使用，用户手册、数据字典和培训是合适的。然而，站点希望为常规人口统计学变量自动输入数据，并且选择退出同意协议有时存在问题。从 2009 年 6 月至 10 月，四个试点医院共收集了 204 名患者的数据（中位数年龄为 71 岁，54%为男性，60%为澳大利亚人），包括缺血性卒中（72%）、脑出血（16%）、短暂性脑缺血发作（9%）和未确定（3%），只有一例选择退出。
澳大利亚卒中临床登记处已经建立，但在实现通过临床医生反馈和允许本地、国家和国际比较数据来改善患者护理的潜力之前，还需要进一步改进和广泛推广。
