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

Frontiers in Medicine

article

Antonio Vitale¹  Francesca Della Casa²  Giuseppe Lopalco³  Rosa Maria Pereira⁴  Piero Ruscitti⁵  Roberto Giacomelli⁶  Gaafar Ragab⁷  Francesco La Torre⁹  Elena Bartoloni^1,10  Emanuela Del Giudice^1,11  Claudia Lomater^1,12  Giacomo Emmi^1,13  Marcello Govoni^1,14  Maria Cristina Maggio^1,15  Armin Maier^1,16  Joanna Makowska^1,17  Benson Ogunjimi^1,18  Petros P. Sfikakis^2,22  Paolo Sfriso^2,23  Carla Gaggiano¹  Florenzo Iannone³  Marília A. Dagostin⁴  Ilenia Di Cola⁵  Luca Navarini⁶  Ayman Abdelmonem Ahmed Mahmoud⁷  Fabio Cardinale⁹  Ilenia Riccucci^1,10  Maria Pia Paroli^2,24  Elena Maria Marucco^1,12  Irene Mattioli^1,13  Jurgen Sota¹  Anna Abbruzzese³  Isabele P. B. Antonelli⁴  Paola Cipriani⁵  Abdurrahman Tufan^2,25  Claudia Fabiani^2,26  Mustafa Mahmoud Ramadan⁷  Marco Cattalini^2,27  Riza Can Kardas^2,25  Gian Domenico Sebastiani^2,28  Henrique A. Mayrink Giardini⁴  José Hernández-Rodríguez^2,29  Violetta Mastrorilli⁹  Ewa Więsik-Szewczyk^3,30  Micol Frassi^3,31  Valeria Caggiano¹  Salvatore Telesca¹  Heitor F. Giordano⁴  Emmanuele Guadalupi¹  Teresa Giani^3,32  Alessandra Renieri^3,33  Sergio Colella³  Giulia Cataldi⁵  Martina Gentile⁵  Alessandra Fabbiani^3,33  Ibrahim A. Al-Maghlouth^3,36  Bruno Frediani^3,37  Alberto Balistreri^3,38  Donato Rigante^3,39  Luca Cantarini¹ 

[1] Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena;Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II;Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari;Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo;Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila;Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma;Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University;Internal Medicine Department, Clinical Immunology and Rheumatology Unit, Newgiza University;Department of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari;Rheumatology Unit, Department of Medicine and Surgery, University of Perugia;Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome;Azienda Ospedaliera ,(AO) Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre;Department of Experimental and Clinical Medicine, University of Florence;Rheumatology Unit, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, Department of Medical Sciences, University of Ferrara;University Department PROMISE “G. D'Alessandro”, University of Palermo;Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano;Department of Rheumatology, Medical University of Lodz;Antwerp Unit for Data Analysis and Computation in Immunology and Sequencing, University of Antwerp;Antwerp Center for Translational Immunology and Virology, Vaccine and Infectious Disease Institute, University of Antwerp;Department of Paediatrics, Antwerp University Hospital;Center for Health Economics Research and Modeling Infectious Diseases, Vaccine and Infectious Disease Institute, University of Antwerp;Joint Academic Rheumatology Program, First Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens;Rheumatology Unit, Department of Medicine, University of Padua;Uveitis Unit, Department of Sense Organs, Eye Clinic, Sapienza University of Rome;Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine;Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena;Pediatric Clinic, University of Brescia and Spedali Civili di Brescia;U.O.C. Reumatologia, Ospedale San Camillo-Forlanini;Vasculitis 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;Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine;Rheumatology and Clinical Immunology, Spedali Civili, Department of Clinical and Experimental Sciences, University of Brescia;Azienda 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;Medical Genetics, Department of Medical Biotechnologies, University of Siena;Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena;Genetica Medica, Azienda Ospedaliero-Universitaria Senese;Department of Family and Community Medicine, College of Medicine, King Saud University;Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese;Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena;Department of Life Sciences and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS;Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore

关键词: autoinflammatory diseases;    precision medicine;    personalized medicine;    rare diseases;    research;    treatment;   

DOI  :  10.3389/fmed.2022.878797

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

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.

【 授权许可】

CC BY