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

Autor

A. Schlaen
Alfredo Adan
Andre Luiz Land Curi
Carlos Cifuentes-González
Claudio Silveira
Cristhian Alejandro Urzua
Cristina Muccioli
Edmund Tsui
German Mejia-Salgado
Heloisa Nascimento
Ikhwanuliman Putera
Jorge Enrique Gomez-Marin
João M. Furtado
Justine Smith
Justus G. Garweg
Jyotirmay Biswas
Kalpana Babu
Kerry Goetz
Marcelo Rudzinski
Maria Vittoria Cicinelli
Mark Westcott
Padmamalini Mahendradas
Quan Dong Nguyen
Ranju Kharel Sitaula
Rina La Distia Nora
Rubens Belfort
Rupesh Agrawal
Sally L. Baxter
Sivaraman Balamurugan
Sofia Androudi
Su Ling HO
V. Gupta
William Rojas-Carabali
Xin Wei
Zheng Xian Thng

Resumen

Purpose: 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.

autores

http://vivoweb.org/ontology/core#FacultyMember
De La Torre Cifuentes, Ligia Alejandra

fecha de publicación

2025-12-1

Área temática

Salud y bienestar

Edición

Número Internacional Normalizado de Publicaciones Seriadas (ISSN)

1869-5760

Identificador de objeto digital (DOI)

https://doi.org/10.1186/s12348-025-00525-2

VIVO
VIVO

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

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Número Internacional Normalizado de Publicaciones Seriadas (ISSN)

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