TY - JOUR
T1 - Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome
AU - Sota, Jurgen
AU - Vitale, Antonio
AU - Więsik-Szewczyk, Ewa
AU - Frassi, Micol
AU - Lopalco, Giuseppe
AU - Emmi, Giacomo
AU - Govoni, Marcello
AU - de Paulis, Amato
AU - Marino, Achille
AU - Gidaro, Antonio
AU - Monti, Sara
AU - Opris-Belinski, Daniela
AU - Pereira, Rosa Maria R.
AU - Jahnz-Rózyk, Karina
AU - Gaggiano, Carla
AU - Crisafulli, Francesca
AU - Iannone, Florenzo
AU - Mattioli, Irene
AU - Ruffilli, Francesca
AU - Mormile, Ilaria
AU - Rybak, Katarzyna
AU - Caggiano, Valeria
AU - Airò, Paolo
AU - Tufan, Abdurrahman
AU - Gentileschi, Stefano
AU - Ragab, Gaafar
AU - Almaghlouth, Ibrahim A.
AU - Aboul-Fotouh Khalil, Adham
AU - Cattalini, Marco
AU - La Torre, Francesco
AU - Tarsia, Maria
AU - Giardini, Henrique A.Mayrink
AU - Ali Saad, Moustafa
AU - Bocchia, Monica
AU - Caroni, Federico
AU - Giani, Teresa
AU - Cinotti, Elisa
AU - Ruscitti, Piero
AU - Rubegni, Pietro
AU - Dagostin, Marília A.
AU - Frediani, Bruno
AU - Guler, Aslihan Avanoglu
AU - Della Casa, Francesca
AU - Maggio, Maria Cristina
AU - Recke, Andreas
AU - von Bubnoff, Dagmar
AU - Krause, Karoline
AU - Balistreri, Alberto
AU - Fabiani, Claudia
AU - Rigante, Donato
AU - Cantarini, Luca
N1 - Publisher Copyright:
Copyright © 2022 Sota, Vitale, Więsik-Szewczyk, Frassi, Lopalco, Emmi, Govoni, de Paulis, Marino, Gidaro, Monti, Opris-Belinski, Pereira, Jahnz-Rózyk, Gaggiano, Crisafulli, Iannone, Mattioli, Ruffilli, Mormile, Rybak, Caggiano, Airò, Tufan, Gentileschi, Ragab, Almaghlouth, Aboul-Fotouh Khalil, Cattalini, La Torre, Tarsia, Giardini, Ali Saad, Bocchia, Caroni, Giani, Cinotti, Ruscitti, Rubegni, Dagostin, Frediani, Guler, Della Casa, Maggio, Recke, von Bubnoff, Krause, Balistreri, Fabiani, Rigante and Cantarini.
PY - 2022/7/18
Y1 - 2022/7/18
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85138449945&partnerID=8YFLogxK
U2 - 10.3389/fmed.2022.931189
DO - 10.3389/fmed.2022.931189
M3 - Journal articles
AN - SCOPUS:85138449945
SN - 2296-858X
VL - 9
JO - Frontiers in medicine
JF - Frontiers in medicine
M1 - 931189
ER -
