Development and Implementation of the AIDA International Registry for Patients With Still's Disease

Maria Cristina Maggio, Abdurrahman Tufan, Ewa Więsik-Szewczyk, Claudia Lomater, Marcello Govoni, Ibrahim A. Al-Maghlouth, Sergio Colella, Alessandra Renieri, Benson Ogunjimi, Joanna Makowska, Francesco La Torre, Giacomo Emmi, Elena Bartoloni, Armin Maier, Luca Navarini, Piero Ruscitti, Antonio Vitale, Rosa Maria Pereira, Gaafar Ragab, Giuseppe LopalcoCarla Gaggiano, Donato Rigante, Heitor F. Giordano, Violetta Mastrorilli, Jurgen Sota, Ilenia Riccucci, Marília A. Dagostin, Gian Domenico Sebastiani, Riza Can Kardas, Ayman Abdelmonem Ahmed Mahmoud, Alessandra Fabbiani, Irene Mattioli, Valeria Caggiano, Ilenia Di Cola, Anna Abbruzzese, Francesca Della Casa, Alessandra Renieri, Emanuela Del Giudice, Henrique A. Mayrink Giardini, Isabele P. B. Antonelli, Mustafa Mahmoud Ramadan, Salvatore Telesca, Emmanuele Guadalupi, Giulia Cataldi, Martina Gentile, Alessandra Renieri, Micol Frassi, Teresa Giani, Alberto Balistreri, Elena Maria Marucco, Marco Cattalini, Paolo Sfriso, Claudia Fabiani, Florenzo Iannone, José Hernández-Rodríguez, Bruno Frediani, Maria Pia Paroli, Fabio Cardinale, Roberto Giacomelli, Petros P. Sfikakis, Paola Cipriani, Luca Cantarini

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)

Abstract

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/.
Original languageEnglish
Number of pages10
JournalFrontiers in Medicine
Volume9
Publication statusPublished - 2022

All Science Journal Classification (ASJC) codes

  • General Medicine

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