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

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 Opris-Belinski, Rosa Maria R. Pereira, Karina Jahnz-Rózyk, Carla Gaggiano, Francesca Crisafulli, Florenzo Iannone, Irene Mattioli, Francesca Ruffilli, Ilaria MormileKatarzyna Rybak, Valeria Caggiano, Paolo Airò, Abdurrahman Tufan, Stefano Gentileschi, Gaafar Ragab, Ibrahim A. Almaghlouth, Adham Aboul-Fotouh Khalil, Marco Cattalini, Francesco La Torre, Maria Tarsia, Henrique A.Mayrink Giardini, Moustafa Ali Saad, Monica Bocchia, Federico Caroni, Teresa Giani, Elisa Cinotti, Piero Ruscitti, Pietro Rubegni, Marília A. Dagostin, Bruno Frediani, Aslihan Avanoglu Guler, Francesca Della Casa, Maria Cristina Maggio, Andreas Recke, Dagmar von Bubnoff, Karoline Krause, Alberto Balistreri, Claudia Fabiani, Donato Rigante, Luca Cantarini*

*Korrespondierende/r Autor/-in für diese Arbeit
1 Zitat (Scopus)

Abstract

Objective: 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. Methods: 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. Results: 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. Conclusions: 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.

OriginalspracheEnglisch
Aufsatznummer931189
ZeitschriftFrontiers in medicine
Jahrgang9
ISSN2296-858X
DOIs
PublikationsstatusVeröffentlicht - 18.07.2022

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