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Common data elements for observational studies in ocular toxoplasmosis: a Delphi consensus

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dc.contributor.authorRojas, William
dc.contributor.authorCifuentes, Carlos
dc.contributor.authorGoetz, Kerry
dc.contributor.authorCicinelli, Maria
dc.contributor.authorZheng , Xian Thng
dc.contributor.authorBaxter, Sally
dc.contributor.authorTsui, Edmund
dc.contributor.authorMahendradas, Padmamalini
dc.contributor.authorBiswas, Jyotirmay
dc.contributor.authorAndroudi, Sofia
dc.contributor.authorLand, Andre
dc.contributor.authorHo, Su Ling
dc.contributor.authorAdán, Alfredo
dc.contributor.authorRina La Distia Nora
dc.contributor.authorSilveira, Claudio
dc.contributor.authorNascimento, Heloisa
dc.contributor.authorFurtado, João
dc.contributor.authorMuccioli, Cristina
dc.contributor.authorMejía, Germán
dc.contributor.authorUrzúa, Cristhian Alejandro
dc.contributor.authorGarweg, Justus
dc.contributor.authorSchlaen, Ariel
dc.contributor.authorWe, Xin
dc.contributor.authorBalamurugan, Sivaraman
dc.contributor.authorSitaula, Ranju
dc.contributor.authorPutera, Ikhwanuliman
dc.contributor.authorRudzinski, Marcelo
dc.contributor.authorBabu, Kalpana
dc.contributor.authorWestcott, Mark
dc.contributor.authorBelfort Jr., Rubens
dc.contributor.authorSmith, Justine
dc.contributor.authorGomez, Jorge
dc.contributor.authorNguyen, Quan Dong
dc.contributor.authorGupta, Vishali
dc.contributor.authorAgrawal, Rupesh
dc.contributor.authorDe la Torre, Alejandra
dc.date.accessioned2026-07-21T15:55:24Z
dc.date.available2026-07-21T15:55:24Z
dc.date.issued2025
dc.description.abstractPurpose: Ocular toxoplasmosis (OT) is the most common cause of posterior uveitis globally, with a significant risk of visual impairment. However, the lack of standardized data collection hinders meaningful comparisons across studies. This study aimed to develop a consensus-based set of Common Data Elements (CDEs) for observational studies in OT using a Delphi approach. Design: A set of CDEs was developed through a combination of a comprehensive literature review, a hybrid workshop, and a Delphi consensus process. This effort was led by an international panel of experts in OT to define a standardized CDE set for research and clinical purposes. Methods: A multidisciplinary steering committee identified an initial list of candidate CDEs through a targeted literature review. A panel of 30 international experts participated in a structured, one-round Delphi process to evaluate and refine these CDEs. Consensus was determined based on predefined thresholds for inclusion, exclusion, and modification. Results: A total of 139 CDEs were categorized across nine domains: Demographic and Background Information, Medical and Ocular History, Clinical Presentation, Clinical Findings, Lesion Characteristics, Diagnostics, Imaging Findings, Treatment and Interventions, and Outcomes. All 139 CDEs met the inclusion criteria, with 79.8% rated as "very important". The consensus underscores the importance of a comprehensive, standardized dataset for OT research. Conclusions: This study establishes the first expert-derived standardized dataset requested for reporting OT outcomes, providing a framework to standardize data collection for future observational studies. Adopting these CDEs will enhance data comparability, improve meta-analyses, and strengthen the evidence base for clinical decision-making in OT. Future work will focus on real-world validation and refinement of this dataset.
dc.description.versionVersión Publicada
dc.identifier.citationRojas-Carabali W, Cifuentes-González C, Goetz K, Cicinelli MV, Thng ZX, Baxter SL, Tsui E, Mahendradas P, Biswas J, Androudi S, Curi ALL, Ho SL, Adán A, La Distia Nora R, Silveira C, Nascimento H, Furtado JM, Muccioli C, Mejía-Salgado G, Urzua CA, Garweg JG, Schlaen A, Wei X, Balamurugan S, Kharel Sitaula R, Putera I, Rudzinski M, Babu K, Westcott M, Belfort R Jr, Smith JR, Gomez-Marin J, Nguyen QD, Gupta V, Agrawal R, de-la-Torre A. Common data elements for observational studies in ocular toxoplasmosis: a Delphi consensus. J Ophthalmic Inflamm Infect. 2025 Sep 24;15(1):68. doi: 10.1186/s12348-025-00525-2
dc.identifier.doihttps://doi.org/10.1186/s12348-025-00525-2
dc.identifier.urihttps://hdl.handle.net/11447/10875
dc.language.isoen
dc.subjectClinical research
dc.subjectCommon data elements
dc.subjectDelphi consensus
dc.subjectOcular toxoplasmosis
dc.subjectStandardization
dc.subjectUveitis
dc.titleCommon data elements for observational studies in ocular toxoplasmosis: a Delphi consensus
dc.typeArticle
dcterms.accessRightsAcceso Abierto
dcterms.sourceJournal of ophthalmic inflammation and infection
dspace.entity.typePublication
relation.isAuthorOfPublicationd1e93d92-ff40-419a-a8dd-1f0a39cd9e5e
relation.isAuthorOfPublication.latestForDiscoveryd1e93d92-ff40-419a-a8dd-1f0a39cd9e5e

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