Kent Peter, Kongsted Alice, Jensen Tue Secher, Albert Hanne B, Schiøttz-Christensen Berit, Manniche Claus
Department of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark.
Department of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark ; Nordic Institute of Chiropractic and Clinical Biomechanics, Odense, Denmark.
Clin Epidemiol. 2015 Aug 13;7:369-80. doi: 10.2147/CLEP.S83830. eCollection 2015.
Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry (SpineData) in a conservative care setting where more than 10,000 new cases of spinal pain are assessed each year. This paper describes the SpineData registry, summarizes the characteristics of its clinical population and data, and signals the availability of these data as a resource for collaborative research projects.
The SpineData registry is an Internet-based system that captures patient data electronically at the point of clinical contact. The setting is the government-funded Medical Department of the Spine Centre of Southern Denmark, Hospital Lillebaelt, where patients receive a multidisciplinary assessment of their chronic spinal pain.
Started in 2011, the database by early 2015 contained information on more than 36,300 baseline episodes of patient care, plus the available 6-month and 12-month follow-up data for these episodes. The baseline questionnaire completion rate has been 93%; 79% of people were presenting with low back pain as their main complaint, 6% with mid-back pain, and 15% with neck pain. Collectively, across the body regions and measurement time points, there are approximately 1,980 patient-related variables in the database across a broad range of biopsychosocial factors. To date, 36 research projects have used data from the SpineData registry, including collaborations with researchers from Denmark, Australia, the United Kingdom, and Brazil.
We described the aims, development, structure, and content of the SpineData registry, and what is known about any attrition bias and cluster effects in the data. For epidemiology research, these data can be linked, at an individual patient level, to the Danish population-based registries and the national spinal surgery registry. SpineData also has potential for the conduct of cohort multiple randomized controlled trials. Collaborations with other researchers are welcome.
大规模临床注册库日益被视为质量保证和研究的重要资源，可为临床决策和卫生政策提供信息。我们在保守治疗环境中建立了一个临床注册库（SpineData），每年评估超过10000例新发脊柱疼痛病例。本文介绍了SpineData注册库，总结了其临床人群和数据的特征，并表明这些数据可作为合作研究项目的资源。
SpineData注册库是一个基于互联网的系统，在临床接触点以电子方式收集患者数据。研究地点是丹麦南部脊柱中心、里伯尔医院由政府资助的医学部，患者在那里接受慢性脊柱疼痛的多学科评估。
该数据库于2011年启动，到2015年初已包含超过36300例患者护理基线事件的信息，以及这些事件可用的6个月和12个月随访数据。基线问卷完成率为93%；79%的人以腰痛为主要主诉，6 %的人以背痛为主要主诉，15%的人以颈部疼痛为主要主诉。总体而言，在身体各部位和测量时间点，数据库中跨广泛生物心理社会因素约有1980个与患者相关的变量。迄今为止，已有36个研究项目使用了SpineData注册库的数据，包括与丹麦、澳大利亚、英国和巴西的研究人员合作。
我们描述了SpineData注册库的目标、发展、结构和内容，以及数据中已知的任何损耗偏倚和聚类效应。对于流行病学研究，这些数据可在个体患者层面与丹麦基于人群的注册库和国家脊柱手术注册库相链接。SpineData也有进行队列多重随机对照试验的潜力。欢迎与其他研究人员合作。
