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Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome

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

10.3389/fmed.2022.931189

2296-858X

Jurgen Sota, Antonio Vitale, Ewa Więsik–Szewczyk, Micol Frassi, Giuseppe Lopalco, Giacomo Emmi, Marcello Govoni, Amato de Paulis, Achille Marino, Antonio Gidaro, Sara Monti, Daniela Opriș-Belinski, Rosa Maria Rodrigues Pereira, Karina Jahnz‐Różyk, Carla Gaggiano, Francesca Crisafulli, Florenzo Iannone, Irene Mattioli, Francesca Ruffilli, Ilaria Mormile, Katarzyna Rybak, Valeria Caggiano, Paolo Airò, Abdurrahman Tufan, Stefano Gentileschi, Gaafar Ragab, Ibrahim Almaghlouth, Adham Aboul-Fotouh Khalil, Marco Cattalini, Francesco La Torre, Maria Tarsia, Henrique Ayres Mayrink Giardini, Moustafa Ali Saad, Monica Bocchia, Federico Caroni, Teresa Giani, Élisa Cinotti, Piero Ruscitti, Pietro Rubegni, Marilia Ambiel Dagostin, Bruno Frediani, Aslıhan Avanoğlu Güler, Francesca Della Casa, Maria Cristina Maggio, Andreas Recke, Dagmar von Bubnoff, Karoline Krause, Alberto Balistreri, Claudia Fabiani, Donato Rigante, Luca Cantarini,

interferon and immune responses

The present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.This is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other existing or future similar registries.Since its launch, 113 centers from 23 countries in 4 continents have been involved. Fifty-seven have already obtained the approval from their local Ethics Committees. The platform counts 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) at current (April 28th, 2022). The registry collects baseline and follow-up data using 3,924 fields organized into 25 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, laboratory, instrumental exams, therapies, socioeconomic information, and healthcare access.This International Registry for patients with Schnitzler's syndrome facilitates standardized data collection, enabling international collaborative projects through data sharing and dissemination of knowledge; in turn, it will shed light into many blind spots characterizing this complex autoinflammatory disorder.