The methodology of a "living" COVID-19 registry development in a clinical context.

Autor: Arienti C; IRCCS Fondazione Don Carlo Gnocchi, Via Capecelatro, 66 - 20100 Milan, Italy. Electronic address: carienti@dongnocchi.it., Campagnini S; IRCCS Fondazione Don Carlo Gnocchi, Via di Scandicci 269 - 50143 Firenze, Italy; The Biorobotics Institute, Scuola Superiore Sant'Anna, Viale Rinaldo Piaggio 34 - 56025 Pontedera, Italy., Brambilla L; IRCCS Fondazione Don Carlo Gnocchi, Via Capecelatro, 66 - 20100 Milan, Italy., Fanciullacci C; IRCCS Fondazione Don Carlo Gnocchi, Via di Scandicci 269 - 50143 Firenze, Italy., Lazzarini SG; IRCCS Fondazione Don Carlo Gnocchi, Via Capecelatro, 66 - 20100 Milan, Italy., Mannini A; IRCCS Fondazione Don Carlo Gnocchi, Via di Scandicci 269 - 50143 Firenze, Italy; The Biorobotics Institute, Scuola Superiore Sant'Anna, Viale Rinaldo Piaggio 34 - 56025 Pontedera, Italy., Patrini M; IRCCS Fondazione Don Carlo Gnocchi, Via Capecelatro, 66 - 20100 Milan, Italy., Carrozza MC; IRCCS Fondazione Don Carlo Gnocchi, Via di Scandicci 269 - 50143 Firenze, Italy; The Biorobotics Institute, Scuola Superiore Sant'Anna, Viale Rinaldo Piaggio 34 - 56025 Pontedera, Italy.
Jazyk: angličtina
Zdroj: Journal of clinical epidemiology [J Clin Epidemiol] 2022 Feb; Vol. 142, pp. 209-217. Date of Electronic Publication: 2021 Nov 14.
DOI: 10.1016/j.jclinepi.2021.11.022
Abstrakt: Objective: The aim of this study was to describe an innovative methodology of a registry development, constantly updated for the scientific assessment and analysis of the health status of the population with COVID-19.
Study Design and Setting: A methodological study design to develop a multi-site, Living COVID-19 Registry of COVID-19 patients admitted in Fondazione Don Gnocchi centres started in March 2020.
Results: The integration of the living systematic reviews and focus group methodologies led to a development of a registry which includes 520 fields filled in for 748 COVID-19 patients recruited from 17 Fondazione Don Gnocchi centres. The result is an evidence and experience-based registry, according to the evolution of a new pathology which was not known before outbreak of March 2020 and with the aim of building knowledge to provide a better quality of care for COVID-19 patients.
Conclusion: A Living COVID-19 Registry is an open, living and up to date access to large-scale patient-level data sets that could help identifying important factors and modulating variable for recognising risk profiles and predicting treatment success in COVID-19 patients hospitalized. This innovative methodology might be used for other registries, to be sure which the data collected is an appropriate means of accomplishing the scientific objectives planned.
Clinical Trial Registration Number: not applicable.
(Copyright © 2021. Published by Elsevier Inc.)
Databáze: MEDLINE
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