Background Patient registries are an established methodology in health services research. Since more than 150 years, registries collect information concerning groups of similar patients to answer research questions. Elaborated recommendations about an appropriate development and an efficient operation of registries are available. However, the scene changes rapidly. Objectives The aim of the study is to describe current trends in registry research for health services research. Methods Registries developed within a German funding scheme for model registries in health services research were analyzed. The observations were compared with recent recommendations of the Agency for Healthcare Research and Quality (AHRQ) on registries in the 21st century. Results Analyzing six registries from the funding scheme revealed the following trends: recruiting healthy individuals, representing familial or other interpersonal relationships, recording of patient-reported experiences or outcomes, accepting participants as study sites, active informing of participants, integrating the registry with other data collections, and transferring data from the registry to electronic patient records. This list partly complies with the issues discussed by the AHRQ. The AHRQ structured its ideas in five chapters, increasing focus on the patient, engaging patients as partners, digital health and patient registries, direct-to-patient registry, and registry networks. Conclusion For the near future, it can be said that the concept and the design of a registry should place the patient in the center. Registries will be increasingly linked together and interconnected with other data collections. New challenges arise regarding the management of data quality and the interpretation of results from less controlled settings. Here, further research related to the methodology of registries is needed.

中文翻译：

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卫生服务研究患者登记的最新趋势

背景 患者登记是卫生服务研究中的一种既定方法。150 多年来，登记处收集有关类似患者群体的信息以回答研究问题。提供了关于适当发展和有效运作登记册的详细建议。然而，场景瞬息万变。目标 本研究的目的是描述卫生服务研究注册研究的当前趋势。方法 分析了在德国资助计划内为卫生服务研究中的示范登记处开发的登记处。将这些观察结果与医疗保健研究和质量机构 (AHRQ) 最近对 21 世纪注册的建议进行了比较。结果 分析来自资助计划的六个登记处发现以下趋势：招募健康个体，代表家庭或其他人际关系，记录患者报告的经历或结果，接受参与者作为研究地点，主动通知参与者，将注册表与其他数据收集整合，并将数据从注册表传输到电子患者记录。该清单部分符合 AHRQ 讨论的问题。AHRQ 将其想法分为五章，增加对患者的关注、让患者成为合作伙伴、数字健康和患者登记处、直接面向患者的登记处和登记处网络。结论 在不久的将来，可以说注册的概念和设计应该以患者为中心。登记处将越来越多地联系在一起，并与其他数据收集相互联系。新的挑战出现在数据质量管理和较少控制环境下的结果解释方面。在这里，需要进一步研究与注册方法相关的研究。