Dataset Information

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

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.

SUBMITTER: Sota J

PROVIDER: S-EPMC9339622 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Publications

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

Sota Jurgen J Vitale Antonio A Więsik-Szewczyk Ewa E Frassi Micol M Lopalco Giuseppe G Emmi Giacomo G Govoni Marcello M de Paulis Amato A Marino Achille A Gidaro Antonio A Monti Sara S Opris-Belinski Daniela D Pereira Rosa Maria R RMR Jahnz-Rózyk Karina K Gaggiano Carla C Crisafulli Francesca F Iannone Florenzo F Mattioli Irene I Ruffilli Francesca F Mormile Ilaria I Rybak Katarzyna K Caggiano Valeria V Airò Paolo P Tufan Abdurrahman A Gentileschi Stefano S Ragab Gaafar G Almaghlouth Ibrahim A IA Aboul-Fotouh Khalil Adham A Cattalini Marco M La Torre Francesco F Tarsia Maria M Giardini Henrique A Mayrink HAM Ali Saad Moustafa M Bocchia Monica M Caroni Federico F Giani Teresa T Cinotti Elisa E Ruscitti Piero P Rubegni Pietro P Dagostin Marília A MA Frediani Bruno B Guler Aslihan Avanoglu AA Della Casa Francesca F Maggio Maria Cristina MC Recke Andreas A von Bubnoff Dagmar D Krause Karoline K Balistreri Alberto A Fabiani Claudia C Rigante Donato D Cantarini Luca L

Frontiers in medicine 20220718

<h4>Objective</h4>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.<h4>Methods</h4>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 ...[more]

PMID: 35924038

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Dataset Information

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

Objective

Methods

Results

Conclusions

Publications

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

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