Design and Development of a Web-Based Prospective Nationwide Registry for Ocular Inflammatory Diseases: UVEITE.PT - The Portuguese Ocular Inflammation Registry.

Autor:	Leal I; 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., Nogueira V; Instituto de Oftalmologia Dr. Gama Pinto, Lisbon, Portugal., Matos DB; 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., Araújo J; Ophthalmology Department, Centro Hospitalar Universitário São João, Porto, Portugal.; Departamento de Cirurgia e Fisiologia, Faculdade de Medicina, Universidade do Porto, Porto, Portugal., Berens O; Ophthalmology Department, Hospital do Espírito Santo, Évora, Portugal., Ribeiro M; Ophthalmology Department, Centro Hospitalar Universitário São João, Porto, Portugal.; Department of Biomedicine, Unit of Pharmacology and Therapeutics, Faculdade de Medicina, Universidade do Porto, Porto, Portugal., Furtado MJ; Ophthalmology Department, Centro Hospitalar Universitário do Porto, Porto, Portugal., Liverani M; Ophthalmology Department, Hospital de Vila Franca de Xira, Vila Franca de Xira, Portugal., Silva MI; Ophthalmology Department, Centro Hospitalar Universitário São João, Porto, Portugal., Guedes M; Ophthalmology Department, Hospital Egas Moniz, Centro Hospitalar de Lisboa Ocidental, Lisbon, Portugal., Cordeiro M; Ophthalmology Department, Hospital Egas Moniz, Centro Hospitalar de Lisboa Ocidental, Lisbon, Portugal., Ribeiro M; Ophthalmology Department, Centro Hospitalar Tondela-Viseu, Viseu, Portugal., José P; 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., Barão R; 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., Nunes Ferreira R; 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., Fonseca S; Ophthalmology Department, Centro Hospitalar de Vila Nova de Gaia/Espinho, Vila Nova de Gaia, Portugal., Mano S; 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., Pina S; Ophthalmology Department, Hospital Beatriz Ângelo, Loures, Portugal., Santos MJ; Rheumatology Department, Hospital Garcia de Orta, Almada, Portugal.; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Centro Académico de Medicina de Lisboa, Lisbon, Portugal., Fonseca JE; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Centro Académico de Medicina de Lisboa, Lisbon, Portugal.; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, Portugal., Fonseca C; Ophthalmology Department, Centro de Responsabilidade Integrado de Oftalmologia, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal., Figueira L; Ophthalmology Department, Centro Hospitalar Universitário São João, Porto, Portugal.; Center for Drug Discovery and Innovative Medicines (MedInUP) of the University of Porto, Porto, Portugal.
Jazyk:	angličtina
Zdroj:	Ocular immunology and inflammation [Ocul Immunol Inflamm] 2024 Apr; Vol. 32 (3), pp. 342-350. Date of Electronic Publication: 2023 Feb 13.
DOI:	10.1080/09273948.2023.2171891
Abstrakt:	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.
Databáze:	MEDLINE
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