Ophthalmology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Centro Académico de Medicina de Lisboa, Lisbon, Portugal.
Centro de Estudos das Ciências da Visão, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal.
Ocul Immunol Inflamm. 2024 Apr;32(3):342-350. doi: 10.1080/09273948.2023.2171891. Epub 2023 Feb 13.
Uveitis is a heterogeneous collection of infrequent diseases, which poses significant challenges to cost-effective research in the field. Medical registries are being increasingly recognized as crucial tools to provide high-quality data, thus enabling prospective clinical research. This paper describes the design and technical structure development of an innovative countrywide electronic medical record for uveitis, Uveite.pt, and gives an overview of the cohort registered since its foundation, March 2020.Uveite.pt is an electronic medical record platform developed by the Portuguese Ocular Inflammation Group (POIG), a scientific committee of the Portuguese Ophthalmology Society. This is a nationwide customized web-based platform for uveitis patients useful for both clinical practice and real-world-based research, working as a central repository and reporting tool for uveitis. This paper describes the technical principles, the design and the development of a web-based interoperable registry for uveitis in Portugal and provides an overview of more than 400 patients registered in the first 18 months since inception.In infrequent diseases, the existence of registries enables to gather evidence and increase research possibilities to clinicians. The adoption of this platform enables standardization and improvement of clinical practice in uveitis. It is useful to apprehend the repercussion of medical and surgical treatments in uveitis and scleritis, supporting clinicians in the strict monitoring of drug adverse reactions and surgical outcomes.
葡萄膜炎是一组罕见疾病,这给该领域具有成本效益的研究带来了重大挑战。医疗登记处越来越被认为是提供高质量数据的重要工具,从而能够进行前瞻性临床研究。本文描述了一种创新性的全国性电子病历 Uveite.pt 的设计和技术结构开发,并概述了自 2020 年 3 月成立以来注册的队列。Uveite.pt 是由葡萄牙眼炎症小组(POIG)开发的电子病历平台,POIG 是葡萄牙眼科学会的一个科学委员会。这是一个全国性的、针对葡萄膜炎患者的定制化网络平台,既适用于临床实践,也适用于基于真实世界的研究,是葡萄膜炎的中央存储库和报告工具。本文描述了葡萄牙葡萄膜炎网络注册中心的技术原理、设计和开发,并概述了自成立以来的 18 个月内注册的 400 多名患者。在罕见疾病中,登记处的存在使临床医生能够收集证据并增加研究的可能性。该平台的采用实现了葡萄膜炎临床实践的标准化和改进。它有助于了解葡萄膜炎和巩膜炎的医疗和手术治疗的影响,为临床医生严格监测药物不良反应和手术结果提供支持。