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Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

2022; Frontiers Media; Volume: 9; Linguagem: Inglês

10.3389/fmed.2022.908501

2296-858X

Francesca Della Casa, Antonio Vitale, Giuseppe Lopalco, Piero Ruscitti, Francesco Ciccia, Giacomo Emmi, Marco Cattalini, Ewa Więsik–Szewczyk, Maria Cristina Maggio, Benson Ogunjimi, Petros P. Sfikakis, Abdurrahman Tufan, Sulaiman M. Al‐Mayouf, Emanuela Del Giudice, Emma Aragona, Francesco La Torre, Jurgen Sota, Sergio Colella, Ilenia Di Cola, Daniela Iacono, Irene Mattioli, Karina Jahnz‐Różyk, Rik Joos, Katerina Laskari, Carla Gaggiano, Anna Abbruzzese, Paola Cipriani, Gelsomina Rozza, Alhanouf AlSaleem, Derya Yıldırım, Maria Tarsia, Gaafar Ragab, Francesca Ricci, Fabio Cardinale, Marcelina Korzeniowska, Micol Frassi, Valeria Caggiano, Moustafa Ali Saad, Rosa Maria Rodrigues Pereira, Virginia Berlengiero, Stefano Gentileschi, Silvana Guerriero, Teresa Giani, Viviana Gelardi, Florenzo Iannone, Henrique Ayres Mayrink Giardini, Ibrahim Almaghlouth, R. C. Kardaş, Djouher Ait‐Idir, Bruno Frediani, Alberto Balistreri, Claudia Fabiani, Donato Rigante, Luca Cantarini,

Osteomyelitis and Bone Disorders Research

Objective This paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods This is an electronic registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions and potentially communicate with other similar tools; this platform ensures security, data quality and data governance. Results The focus of the AIDA project is connecting physicians and researchers from all over the world to shed a new light on heterogeneous rare diseases. Since its birth, 110 centers from 23 countries and 4 continents have joined the AIDA project. Fifty-four centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 179 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3,769 fields organized into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare information access for USAIDs patients. Conclusions The development of the AIDA International Registry for USAIDs patients will facilitate the online collection of real standardized data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the patient cohort of USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases. NCT 05200715 available at https://clinicaltrials.gov/ .