Development and Implementation of the AIDA International Registry for
Patients with Non-Infectious Uveitis
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Abstract
Introduction The aim of this paper is to point out the design,
development and deployment of the AutoInflammatory Disease Alliance
(AIDA) International Registry for paediatric and adult patients with
non-infectious uveitis (NIU). Methods This is a physician-driven,
population- and electronic-based registry implemented for both
retrospective and prospective collection of real-world demographics,
clinical, laboratory, instrumental and socioeconomic data of patients
with uveitis and other non-infectious inflammatory ocular diseases
recruited through the AIDA Network. Data recruitment, based on the
Research Electronic Data Capture (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
potentially communicate with other similar instruments. Security, data
quality and data governance are cornerstones of this platform. Results
Ninety-five centres have been involved from 19 countries and four
continents from 24 March to 16 November 2021. Forty-eight out of 95 have
already obtained the 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 AIDA
Registry collects baseline and follow-up data using 3943 fields
organised into 13 instruments, including patient's demographics,
history, symptoms, trigger/risk factors, therapies and healthcare
utilization for patients with NIU. Conclusions The development of the
AIDA Registry for patients with NIU will facilitate the collection of
standardised data leading to real-world evidence and enabling
international multicentre collaborative research through inclusion of
patients and their families worldwide