Development and implementation of the AIDA International Registry for patients with Behçet’s disease
Authors: Vitale Antonio , Della Casa Francesca , Ragab Gaafar , Almaghlouth Ibrahim A. , Lopalco Giuseppe , Pereira Rosa Maria , Guerriero Silvana , Govoni Marcello , Sfikakis Petros P. , Giacomelli Roberto , Ciccia Francesco , Monti Sara , Ruscitti Piero , Piga Matteo , Lomater Claudia , Tufan Abdurrahman , Opris-Belinski Daniela , Emmi Giacomo , Hernández-Rodríguez José , Şahin Ali , Sebastiani Gian Domenico , Bartoloni Elena , Akkoç Nurullah , Gündüz Özgül Soysal , Cattalini Marco , Conti Giovanni , Hatemi Gulen , Maier Armin , Parronchi Paola , Del Giudice Emanuela , Erten Sukran , Insalaco Antonella , Li Gobbi Francesca , Maggio Maria Cristina , Shahram Farhad , Caggiano Valeria , Hegazy Mohamed Tharwat , Asfina Kazi Nur , Morrone Maria , Prado Leandro L. , Dammacco Rosanna , Ruffilli Francesca , Arida Aikaterini , Navarini Luca , Pantano Ilenia , Cavagna Lorenzo , Conforti Alessandro , Cauli Alberto , Marucco Elena Maria , Kucuk Hamit , Ionescu Ruxandra , Mattioli Irene , Espinosa Gerard , Araújo Olga , Karkaş Burak , Canofari Claudia , Sota Jurgen , Laymouna Ahmed Hatem , Bedaiwi Asma. A. , Colella Sergio , Giardini Henrique Ayres M. , Albano Valeria , Lo Monaco Andrea , Fragoulis George E. , Kardas Riza Can , Berlengiero Virginia , Hussein Mohamed A. , Ricci Francesca , La Torre Francesco , Rigante Donato , Więsik-Szewczyk Ewa , Frassi Micol , Gentileschi Stefano , Tosi Gian Marco , Dagostin Marilia Ambiel , Mahmoud Ayman Abdel-Monem Ahmed , Tarsia Maria , Alessio Giovanni , Cimaz Rolando , Giani Teresa , Gaggiano Carla , Iannone Florenzo , Cipriani Paola , Mourabi Mariam , Spedicato Veronica , Barneschi Sara , Aragona Emma , Balistreri Alberto , Frediani Bruno , Fabiani Claudia , Cantarini Luca ,   Autoinflammatory Diseases Alliance (AIDA) Network
Published: July 2022

AbstractPurpose of the present paper is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients with Behçet’s disease (BD). The Registry is a clinical physician-driven non-population- and electronic-based instrument implemented for the retrospective and prospective collection of real-life data about demographics, clinical, therapeutic, laboratory, instrumental and socioeconomic information from BD patients; the Registry is based on the Research Electronic Data Capture (REDCap) tool, which is thought to collect standardised information for clinical real-life research, and has been realised to change over time according to future scientific acquisitions and potentially communicate with other existing and future Registries dedicated to BD. Starting from January 31st, 2021, to February 7th, 2022, 110 centres from 23 countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 5993 fields organised into 16 instruments, including patient’s demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. The development of the AIDA International Registry for BD patients will facilitate the collection of standardised data leading to real-world evidence, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately optimisation of scientific efforts and implementation of standardised care.Trial registration NCT05200715 in 21/01/2022.