Department of Pediatrics, Rady Faculty of Health Sciences, University of Manitoba, 501F-715 McDermot Ave, Winnipeg, Manitoba, R3E 3P4, Canada.
Division of Rheumatology, The Hospital for Sick Children, Toronto, Canada.
Curr Rheumatol Rep. 2019 Dec 12;22(1):2. doi: 10.1007/s11926-019-0874-1.
While rheumatic disease registries collect longitudinal patient information, longitudinal analytic methods are usually not applied to these data. This review will showcase advances in longitudinal designs/analyses, and ways to leverage digital technologies to recruit and retain more registry participants.
We will show how the accelerated cohort and longitudinal multiform methods are more efficient than traditional longitudinal designs. We illustrate how a smartphone app is used to recruit participants for a new rheumatic disease registry in the USA. Examples of newer longitudinal techniques applied in myositis and childhood-onset lupus are also presented. Applying high-efficiency longitudinal design and analysis let investigators leverage the rich registry information collected over time. They allow more sophisticated and precise questions to be asked about the disease course of myositis and other rheumatic diseases, which in turn will inform the practice of clinicians and important decisions made by stakeholders.
风湿性疾病登记处收集纵向患者信息，但通常不将纵向分析方法应用于这些数据。本综述将展示纵向设计/分析的进展，以及利用数字技术招募和留住更多登记参与者的方法。
我们将展示加速队列和纵向多形式方法比传统的纵向设计更有效。我们举例说明了如何使用智能手机应用程序招募美国新的风湿性疾病登记处的参与者。还介绍了在肌炎和儿童期发病狼疮中应用的更新的纵向技术示例。应用高效的纵向设计和分析可以让研究人员利用随着时间的推移积累的丰富登记信息。它们允许提出关于肌炎和其他风湿性疾病病程的更复杂和精确的问题，进而为临床医生的实践和利益相关者的重要决策提供信息。
