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Development and Implementation of the AIDA International Registry for Patients With Still's Disease
OBJECTIVE: Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pedia...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Frontiers Media S.A.
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9021753/ https://www.ncbi.nlm.nih.gov/pubmed/35463015 http://dx.doi.org/10.3389/fmed.2022.878797 |
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author | Vitale, Antonio Della Casa, Francesca Lopalco, Giuseppe Pereira, Rosa Maria Ruscitti, Piero Giacomelli, Roberto Ragab, Gaafar La Torre, Francesco Bartoloni, Elena Del Giudice, Emanuela Lomater, Claudia Emmi, Giacomo Govoni, Marcello Maggio, Maria Cristina Maier, Armin Makowska, Joanna Ogunjimi, Benson Sfikakis, Petros P. Sfriso, Paolo Gaggiano, Carla Iannone, Florenzo Dagostin, Marília A. Di Cola, Ilenia Navarini, Luca Ahmed Mahmoud, Ayman Abdelmonem Cardinale, Fabio Riccucci, Ilenia Paroli, Maria Pia Marucco, Elena Maria Mattioli, Irene Sota, Jurgen Abbruzzese, Anna Antonelli, Isabele P. B. Cipriani, Paola Tufan, Abdurrahman Fabiani, Claudia Ramadan, Mustafa Mahmoud Cattalini, Marco Kardas, Riza Can Sebastiani, Gian Domenico Giardini, Henrique A. Mayrink Hernández-Rodríguez, José Mastrorilli, Violetta Więsik-Szewczyk, Ewa Frassi, Micol Caggiano, Valeria Telesca, Salvatore Giordano, Heitor F. Guadalupi, Emmanuele Giani, Teresa Renieri, Alessandra Colella, Sergio Cataldi, Giulia Gentile, Martina Fabbiani, Alessandra Al-Maghlouth, Ibrahim A. Frediani, Bruno Balistreri, Alberto Rigante, Donato Cantarini, Luca |
author_facet | Vitale, Antonio Della Casa, Francesca Lopalco, Giuseppe Pereira, Rosa Maria Ruscitti, Piero Giacomelli, Roberto Ragab, Gaafar La Torre, Francesco Bartoloni, Elena Del Giudice, Emanuela Lomater, Claudia Emmi, Giacomo Govoni, Marcello Maggio, Maria Cristina Maier, Armin Makowska, Joanna Ogunjimi, Benson Sfikakis, Petros P. Sfriso, Paolo Gaggiano, Carla Iannone, Florenzo Dagostin, Marília A. Di Cola, Ilenia Navarini, Luca Ahmed Mahmoud, Ayman Abdelmonem Cardinale, Fabio Riccucci, Ilenia Paroli, Maria Pia Marucco, Elena Maria Mattioli, Irene Sota, Jurgen Abbruzzese, Anna Antonelli, Isabele P. B. Cipriani, Paola Tufan, Abdurrahman Fabiani, Claudia Ramadan, Mustafa Mahmoud Cattalini, Marco Kardas, Riza Can Sebastiani, Gian Domenico Giardini, Henrique A. Mayrink Hernández-Rodríguez, José Mastrorilli, Violetta Więsik-Szewczyk, Ewa Frassi, Micol Caggiano, Valeria Telesca, Salvatore Giordano, Heitor F. Guadalupi, Emmanuele Giani, Teresa Renieri, Alessandra Colella, Sergio Cataldi, Giulia Gentile, Martina Fabbiani, Alessandra Al-Maghlouth, Ibrahim A. Frediani, Bruno Balistreri, Alberto Rigante, Donato Cantarini, Luca |
author_sort | Vitale, Antonio |
collection | PubMed |
description | OBJECTIVE: Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder. METHODS: This Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management. The collection of standardized data is thought to bring knowledge about real-life clinical research and potentially communicate with other existing and future Registries dedicated to Still's disease. Moreover, it has been conceived to be flexible enough to easily change according to future scientific acquisitions. RESULTS: Starting from June 30th to February 7th, 2022, 110 Centers from 23 Countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 4449 fields organized into 14 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. CONCLUSIONS: This international Registry for patients with Still's disease will allow a robust clinical research through collection of standardized data, international consultation, dissemination of knowledge, and implementation of observational studies based on wide cohorts of patients followed-up for very long periods. Solid evidence drawn from “real-life” data represents the ultimate goal of this Registry, which has been implemented to significantly improve the overall management of patients with Still's disease. NCT 05200715 available at https://clinicaltrials.gov/. |
format | Online Article Text |
id | pubmed-9021753 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-90217532022-04-22 Development and Implementation of the AIDA International Registry for Patients With Still's Disease Vitale, Antonio Della Casa, Francesca Lopalco, Giuseppe Pereira, Rosa Maria Ruscitti, Piero Giacomelli, Roberto Ragab, Gaafar La Torre, Francesco Bartoloni, Elena Del Giudice, Emanuela Lomater, Claudia Emmi, Giacomo Govoni, Marcello Maggio, Maria Cristina Maier, Armin Makowska, Joanna Ogunjimi, Benson Sfikakis, Petros P. Sfriso, Paolo Gaggiano, Carla Iannone, Florenzo Dagostin, Marília A. Di Cola, Ilenia Navarini, Luca Ahmed Mahmoud, Ayman Abdelmonem Cardinale, Fabio Riccucci, Ilenia Paroli, Maria Pia Marucco, Elena Maria Mattioli, Irene Sota, Jurgen Abbruzzese, Anna Antonelli, Isabele P. B. Cipriani, Paola Tufan, Abdurrahman Fabiani, Claudia Ramadan, Mustafa Mahmoud Cattalini, Marco Kardas, Riza Can Sebastiani, Gian Domenico Giardini, Henrique A. Mayrink Hernández-Rodríguez, José Mastrorilli, Violetta Więsik-Szewczyk, Ewa Frassi, Micol Caggiano, Valeria Telesca, Salvatore Giordano, Heitor F. Guadalupi, Emmanuele Giani, Teresa Renieri, Alessandra Colella, Sergio Cataldi, Giulia Gentile, Martina Fabbiani, Alessandra Al-Maghlouth, Ibrahim A. Frediani, Bruno Balistreri, Alberto Rigante, Donato Cantarini, Luca Front Med (Lausanne) Medicine OBJECTIVE: Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder. METHODS: This Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management. The collection of standardized data is thought to bring knowledge about real-life clinical research and potentially communicate with other existing and future Registries dedicated to Still's disease. Moreover, it has been conceived to be flexible enough to easily change according to future scientific acquisitions. RESULTS: Starting from June 30th to February 7th, 2022, 110 Centers from 23 Countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 4449 fields organized into 14 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. CONCLUSIONS: This international Registry for patients with Still's disease will allow a robust clinical research through collection of standardized data, international consultation, dissemination of knowledge, and implementation of observational studies based on wide cohorts of patients followed-up for very long periods. Solid evidence drawn from “real-life” data represents the ultimate goal of this Registry, which has been implemented to significantly improve the overall management of patients with Still's disease. NCT 05200715 available at https://clinicaltrials.gov/. Frontiers Media S.A. 2022-04-07 /pmc/articles/PMC9021753/ /pubmed/35463015 http://dx.doi.org/10.3389/fmed.2022.878797 Text en Copyright © 2022 Vitale, Della Casa, Lopalco, Pereira, Ruscitti, Giacomelli, Ragab, La Torre, Bartoloni, Del Giudice, Lomater, Emmi, Govoni, Maggio, Maier, Makowska, Ogunjimi, Sfikakis, Sfriso, Gaggiano, Iannone, Dagostin, Di Cola, Navarini, Ahmed Mahmoud, Cardinale, Riccucci, Paroli, Marucco, Mattioli, Sota, Abbruzzese, Antonelli, Cipriani, Tufan, Fabiani, Ramadan, Cattalini, Kardas, Sebastiani, Giardini, Hernández-Rodríguez, Mastrorilli, Więsik-Szewczyk, Frassi, Caggiano, Telesca, Giordano, Guadalupi, Giani, Renieri, Colella, Cataldi, Gentile, Fabbiani, Al-Maghlouth, Frediani, Balistreri, Rigante and Cantarini. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Medicine Vitale, Antonio Della Casa, Francesca Lopalco, Giuseppe Pereira, Rosa Maria Ruscitti, Piero Giacomelli, Roberto Ragab, Gaafar La Torre, Francesco Bartoloni, Elena Del Giudice, Emanuela Lomater, Claudia Emmi, Giacomo Govoni, Marcello Maggio, Maria Cristina Maier, Armin Makowska, Joanna Ogunjimi, Benson Sfikakis, Petros P. Sfriso, Paolo Gaggiano, Carla Iannone, Florenzo Dagostin, Marília A. Di Cola, Ilenia Navarini, Luca Ahmed Mahmoud, Ayman Abdelmonem Cardinale, Fabio Riccucci, Ilenia Paroli, Maria Pia Marucco, Elena Maria Mattioli, Irene Sota, Jurgen Abbruzzese, Anna Antonelli, Isabele P. B. Cipriani, Paola Tufan, Abdurrahman Fabiani, Claudia Ramadan, Mustafa Mahmoud Cattalini, Marco Kardas, Riza Can Sebastiani, Gian Domenico Giardini, Henrique A. Mayrink Hernández-Rodríguez, José Mastrorilli, Violetta Więsik-Szewczyk, Ewa Frassi, Micol Caggiano, Valeria Telesca, Salvatore Giordano, Heitor F. Guadalupi, Emmanuele Giani, Teresa Renieri, Alessandra Colella, Sergio Cataldi, Giulia Gentile, Martina Fabbiani, Alessandra Al-Maghlouth, Ibrahim A. Frediani, Bruno Balistreri, Alberto Rigante, Donato Cantarini, Luca Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title | Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title_full | Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title_fullStr | Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title_full_unstemmed | Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title_short | Development and Implementation of the AIDA International Registry for Patients With Still's Disease |
title_sort | development and implementation of the aida international registry for patients with still's disease |
topic | Medicine |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9021753/ https://www.ncbi.nlm.nih.gov/pubmed/35463015 http://dx.doi.org/10.3389/fmed.2022.878797 |
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