Purpose

Our aim is to point out the design, development and deployment of the AIDA International Registries for paediatric and adult patients with NIU and NIS.

Methods

These are physician-driven, population- and electronic-based registries implemented for both retrospective and prospective collection of real-world data of NIU and NIS patients. Data recruitment, based on the REDCap tool, is thought to collect standardised information for real-life research and has been developed to change over time according to future scientific acquisitions and communicate with other similar instruments. The REDCap tool uses, respectively, 3943 fields organised into 13 forms for NIU registry, and 3885 fields organised in 13 forms for NIS registry. The different fields include patient’s demographics, history, clinical manifestations and symptoms, risk factors, therapies, and healthcare access. Security, data quality and data governance are cornerstones of this platform.

Results

From the creation to January 2022, 107 centres from 23 countries in 4 continents have been involved in the AIDA project. Forty-eight of these have already obtained the approval from their local ethics committees. The platform counts 287 users (108 principal investigators, 179 site investigators, 2 lead investigators, and 2 data managers). Currently, 408 patients (346 NIU and 62 NIS) have been enrolled in the registries.

Conclusions

The development of the AIDA International Registries for patients with NIU and NIS allows solid research on these rare diseases. Real-world evidence resulting from standardised real-life data will lead to the optimisation of routinely clinical and therapeutic management, which are currently limited by the rarity of these ocular inflammatory conditions and the fragmentation of scientific efforts.