Development and Implementation of the AIDA International Registry for Patients with Non-Infectious Scleritis.
Обработка статьи · этапы, ошибки и управление
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Della Casa Francesca, Vitale Antonio, Pereira Rosa Maria, Guerriero Silvana, Ragab Gaafar, Lopalco Giuseppe, Cattalini Marco, Mattioli Irene, Parronchi Paola, Paroli Maria Pia, Del Giudice Emanuela, Gaggiano Carla, Dagostin Marília A, Albano Valeria, Soliman Mahmoud M, Colella Sergio, Nascimbeni Giuseppe, Sota Jurgen, Antonelli Isabele P B, Alessio Giovanni, Caggiano Valeria, Tufan Abdurrahman, Amin Rana Hussein, Tarsia Maria, Ghanema Mahmoud, Iannone Florenzo, Ricci Francesca, La Torre Francesco, Więsik-Szewczyk Ewa, Conticini Edoardo, Gentileschi Stefano, Dammacco Rosanna, Cimaz Rolando, Frediani Bruno, Abbruzzese Anna, Ruscitti Piero, Tosi Gian Marco, Giordano Heitor F, Conforti Alessandro, Balistreri Alberto, Rigante Donato, Cantarini Luca, Fabiani Claudia
Аннотация
METHODS: This registry collects both retrospective and prospective real-world data from patients with non-infectious scleritis through the Research Electronic Data Capture (REDCap) tool and aims to promote knowledge and real-life evidence from patients enrolled worldwide; the registry also allows the collection of standardised data, ensuring the highest levels of security and anonymity of patients' data and flexibility to change according to scientific acquisitions over time. The communication with other similar registries has been also ensured in order to pursue the sustainability of the project with respect to the adaptation of collected data to the most diverse research projects.
RESULTS: Since the launch of the registry, 99 centres have been involved from 20 countries and four continents. Forty-eight of the centres have already obtained a formal approval from their local ethics committees. At present, the platform counts 259 users (95 principal investigators, 160 site investigators, 2 lead investigators, and 2 data managers); the platform collects baseline and follow-up data using 3683 fields organised into 13 instruments, including patient's demographics, history, symptoms, trigger or risk factors, therapies and healthcare utilization.
CONCLUSIONS: The development of the AIDA International Registry for patients with non-infectious scleritis will allow solid research on this rare condition. Real-world evidence resulting from standardised real-life data will lead to the optimisation of routine clinical and therapeutic management, which are currently limited by the rarity of this ocular inflammatory condition.