Frontiers in Medicine (Apr 2022)
Development and Implementation of the AIDA International Registry for Patients With Still's Disease
- Antonio Vitale,
- Francesca Della Casa,
- Giuseppe Lopalco,
- Rosa Maria Pereira,
- Piero Ruscitti,
- Roberto Giacomelli,
- Gaafar Ragab,
- Gaafar Ragab,
- Francesco La Torre,
- Elena Bartoloni,
- Emanuela Del Giudice,
- Claudia Lomater,
- Giacomo Emmi,
- Marcello Govoni,
- Maria Cristina Maggio,
- Armin Maier,
- Joanna Makowska,
- Benson Ogunjimi,
- Benson Ogunjimi,
- Benson Ogunjimi,
- Benson Ogunjimi,
- Petros P. Sfikakis,
- Paolo Sfriso,
- Carla Gaggiano,
- Florenzo Iannone,
- Marília A. Dagostin,
- Ilenia Di Cola,
- Luca Navarini,
- Ayman Abdelmonem Ahmed Mahmoud,
- Fabio Cardinale,
- Ilenia Riccucci,
- Maria Pia Paroli,
- Elena Maria Marucco,
- Irene Mattioli,
- Jurgen Sota,
- Anna Abbruzzese,
- Isabele P. B. Antonelli,
- Paola Cipriani,
- Abdurrahman Tufan,
- Claudia Fabiani,
- Mustafa Mahmoud Ramadan,
- Marco Cattalini,
- Riza Can Kardas,
- Gian Domenico Sebastiani,
- Henrique A. Mayrink Giardini,
- José Hernández-Rodríguez,
- Violetta Mastrorilli,
- Ewa Więsik-Szewczyk,
- Micol Frassi,
- Valeria Caggiano,
- Salvatore Telesca,
- Heitor F. Giordano,
- Emmanuele Guadalupi,
- Teresa Giani,
- Alessandra Renieri,
- Alessandra Renieri,
- Alessandra Renieri,
- Sergio Colella,
- Giulia Cataldi,
- Martina Gentile,
- Alessandra Fabbiani,
- Alessandra Fabbiani,
- Alessandra Fabbiani,
- Ibrahim A. Al-Maghlouth,
- Bruno Frediani,
- Alberto Balistreri,
- Donato Rigante,
- Donato Rigante,
- Luca Cantarini
Affiliations
- Antonio Vitale
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Francesca Della Casa
- Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy
- Giuseppe Lopalco
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Rosa Maria Pereira
- Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil
- Piero Ruscitti
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Roberto Giacomelli
- Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy
- Gaafar Ragab
- Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
- Gaafar Ragab
- Internal Medicine Department, Clinical Immunology and Rheumatology Unit, Newgiza University (NGU), Giza, Egypt
- Francesco La Torre
- Department of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy
- Elena Bartoloni
- 0Rheumatology Unit, Department of Medicine and Surgery, University of Perugia, Perugia, Italy
- Emanuela Del Giudice
- 1Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy
- Claudia Lomater
- 2Azienda Ospedaliera (AO) Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy
- Giacomo Emmi
- 3Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Marcello Govoni
- 4Rheumatology Unit, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, Department of Medical Sciences, University of Ferrara, Ferrara, Italy
- Maria Cristina Maggio
- 5University Department PROMISE “G. D'Alessandro”, University of Palermo, Palermo, Italy
- Armin Maier
- 6Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy
- Joanna Makowska
- 7Department of Rheumatology, Medical University of Lodz, Łódź, Poland
- Benson Ogunjimi
- 8Antwerp Unit for Data Analysis and Computation in Immunology and Sequencing, University of Antwerp, Antwerp, Belgium
- Benson Ogunjimi
- 9Antwerp Center for Translational Immunology and Virology, Vaccine and Infectious Disease Institute, University of Antwerp, Antwerp, Belgium
- Benson Ogunjimi
- 0Department of Paediatrics, Antwerp University Hospital, Antwerp, Belgium
- Benson Ogunjimi
- 1Center for Health Economics Research and Modeling Infectious Diseases, Vaccine and Infectious Disease Institute, University of Antwerp, Antwerp, Belgium
- Petros P. Sfikakis
- 2Joint Academic Rheumatology Program, First Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece
- Paolo Sfriso
- 3Rheumatology Unit, Department of Medicine, University of Padua, Padua, Italy
- Carla Gaggiano
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Florenzo Iannone
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Marília A. Dagostin
- Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil
- Ilenia Di Cola
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Luca Navarini
- Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy
- Ayman Abdelmonem Ahmed Mahmoud
- Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
- Fabio Cardinale
- Department of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy
- Ilenia Riccucci
- 0Rheumatology Unit, Department of Medicine and Surgery, University of Perugia, Perugia, Italy
- Maria Pia Paroli
- 4Uveitis Unit, Department of Sense Organs, Eye Clinic, Sapienza University of Rome, Rome, Italy
- Elena Maria Marucco
- 2Azienda Ospedaliera (AO) Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy
- Irene Mattioli
- 3Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Jurgen Sota
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Anna Abbruzzese
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Isabele P. B. Antonelli
- Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil
- Paola Cipriani
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Abdurrahman Tufan
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Claudia Fabiani
- 6Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
- Mustafa Mahmoud Ramadan
- Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
- Marco Cattalini
- 7Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
- Riza Can Kardas
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Gian Domenico Sebastiani
- 8U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy
- Henrique A. Mayrink Giardini
- Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil
- José Hernández-Rodríguez
- 9Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, Institut d'Investigacions Biomédiques August Pi i Sunyer (IDIBAPS), University of Barcelona, Barcelona, Spain
- Violetta Mastrorilli
- Department of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy
- Ewa Więsik-Szewczyk
- 0Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
- Micol Frassi
- 1Rheumatology and Clinical Immunology, Spedali Civili, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
- Valeria Caggiano
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Salvatore Telesca
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Heitor F. Giordano
- Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil
- Emmanuele Guadalupi
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- Teresa Giani
- 2Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Traumatologico Ortopedico (CTO), Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy
- Alessandra Renieri
- 3Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy
- Alessandra Renieri
- 4Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy
- Alessandra Renieri
- 5Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Sergio Colella
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Giulia Cataldi
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Martina Gentile
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Alessandra Fabbiani
- 3Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy
- Alessandra Fabbiani
- 4Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy
- Alessandra Fabbiani
- 5Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Ibrahim A. Al-Maghlouth
- 6Department of Family and Community Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
- Bruno Frediani
- 7Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Alberto Balistreri
- 8Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy
- Donato Rigante
- 9Department of Life Sciences and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Donato Rigante
- 0Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore, Rome, Italy
- Luca Cantarini
- Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy
- DOI
- https://doi.org/10.3389/fmed.2022.878797
- Journal volume & issue
-
Vol. 9
Abstract
ObjectiveAim 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.MethodsThis 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.ResultsStarting 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.ConclusionsThis 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/.
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