Development and Implementation of the AIDA International Registry for Patients with Non-Infectious Scleritis

• DOI: 10.1007/s40123-022-00466-2
• Publication Date: 2022-01-29T10:02:56Z
• Authors: Francesca Della Casa; Antonio Vitale; Rosa Maria Pereira; Silvana Guerriero; Gaafar Ragab; Giuseppe Lopalco; Marco Cattalini; Irene Mattioli; Paola Parronchi; Maria Pia Paroli; Emanuela Del Giudice; Carla Gaggiano; Marília A. Dagostin; Valeria Albano; Mahmoud M. Soliman; Sergio Colella; Giuseppe Nascimbeni; Jurgen Sota; Isabele P. B. Ant...; Giovanni Alessio; Valeria Caggiano; Abdurrahman Tufan; Rana Hussein Amin; Maria Tarsia; Mahmoud Ghanema; Florenzo Iannone; Francesca Ricci; Francesco La Torre; Ewa Więsik-Szewczyk; Edoardo Conticini; Stefano Gentileschi; Rosanna Dammacco; Rolando Cimaz; Bruno Frediani; Anna Abbruzzese; Piero Ruscitti; Gian Marco Tosi; Heitor F. Giordano; Alessandro Conforti; Alberto Balistreri; Donato Rigante; Luca Cantarini; Claudia Fabiani
• Keywords: Autoinflammatory disease; Inflammatory ocular disease; Clinical management; Precision medicine; 610; Rare diseases; 3. Good health; Study Protocol; 03 medical and health sciences; 0302 clinical medicine; Innovative biotechnologie; International registry; Autoinflammatory diseases; Clinical management; Inflammatory ocular diseases; Innovative biotechnologies; International registry; Personalised medicine; Precision medicine; Rare diseases; Personalised medicine; autoinflammatory diseases; clinical management; inflammatory ocular diseases; innovative biotechnologies; international registry; personalised medicine; precision medicine; rare diseases; Scleritis

This article points out the design, methods, development and deployment of international registry promoted by AutoInflammatory Disease Alliance (AIDA) Network with aim to define assess paediatric adult patients immune-mediated scleritis. collects both retrospective prospective real-world data from non-infectious scleritis through Research Electronic Data Capture (REDCap) tool aims promote knowledge real-life evidence enrolled worldwide; also allows collection standardised data, ensuring highest levels security anonymity patients' flexibility change according scientific acquisitions over time. The communication other similar registries has been ensured in order pursue sustainability project respect adaptation collected most diverse research projects. Since launch registry, 99 centres have involved 20 countries four continents. Forty-eight already obtained a formal approval their local ethics committees. At present, platform counts 259 users (95 principal investigators, 160 site 2 lead managers); baseline follow-up using 3683 fields organised into 13 instruments, including patient's demographics, history, symptoms, trigger or risk factors, therapies healthcare utilization. AIDA International Registry for will allow solid on this rare condition. Real-world resulting optimisation routine clinical therapeutic management, which are currently limited rarity ocular inflammatory