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从大流行期间的疾病登记处中学习:迈向国际患者登记处联合会。

Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.

机构信息

Hair Restoration Blackrock, Dublin, Ireland; National and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland; School of Medicine, University College Dublin, Dublin, Ireland.

Division of Dermatology and Sunnybrook Research Institute, University of Toronto, Ontario, Canada.

出版信息

Clin Dermatol. 2021 May-Jun;39(3):467-478. doi: 10.1016/j.clindermatol.2021.01.018. Epub 2021 Apr 6.

Abstract

High-quality dermatology patient registries often require considerable time to develop and produce meaningful data. Development time is influenced by registry complexity and regulatory hurdles that vary significantly nationally and institutionally. The rapid emergence of the coronavirus disease 2019 (COVID-19) global pandemic has challenged health services in an unprecedented manner. Mobilization of the dermatology community in response has included rapid development and deployment of multiple, partially harmonized, international patient registries, reinventing established patient registry timelines. Partnership with patient organizations has demonstrated the critical nature of inclusive patient involvement. This global effort has demonstrated the value, capacity, and necessity for the dermatology community to adopt a more cohesive approach to patient registry development and data sharing that can lead to myriad benefits. These include improved utilization of limited resources, increased data interoperability, improved ability to rapidly collect meaningful data, and shortened response times to generate real-world evidence. We call on the global dermatology community to support the development of an international federation of patient registries to consolidate and operationalize the lessons learned during this pandemic. This will provide an enduring means of applying this knowledge to the maintenance and development of sustainable, coherent, and impactful patient registries of benefit now and in the future.

摘要

高质量的皮肤病患者登记处通常需要相当长的时间来开发和产生有意义的数据。开发时间受到登记处的复杂性和监管障碍的影响,这些障碍在国家和机构之间有很大的差异。2019 年冠状病毒病(COVID-19)的迅速出现以史无前例的方式挑战了卫生服务。皮肤科界的动员包括快速开发和部署多个部分协调的国际患者登记处,重新制定既定的患者登记处时间表。与患者组织的合作表明了包容性患者参与的重要性。这项全球努力表明,皮肤科界需要采取更具凝聚力的方法来开发患者登记处和共享数据,这可以带来无数的好处。这些好处包括更好地利用有限的资源,提高数据互操作性,提高快速收集有意义数据的能力,以及缩短生成真实世界证据的响应时间。我们呼吁全球皮肤科界支持建立一个国际患者登记处联合会,以整合和实施在这场大流行期间所获得的经验教训。这将为应用这些知识提供持久的手段,以维护和发展可持续、连贯和有影响力的患者登记处,造福现在和未来。

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