Development and implementation of the AIDA International Registry for patients with Behçet’s disease

Abstract

Purpose 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.

Shaping the Future of Behçet’s Uveitis Management: A Comprehensive Review of Efficacy, Challenges, and Prospects of Biologic Therapies

“…The relatively infrequent occurrence and geographical dispersion of Behçet's uveitis (BU) present formidable hurdles to both comprehensive clinical trials and practical clinical research. Overcoming such impediments calls for intensified global cooperation and meticulous data collection, encapsulated in platforms such as the AutoInflammatory Disease Alliance (AIDA) International Registry [ 135 ]. This instrument, defying the geographic limitations often linked to rare disorders like BU, furnishes in-depth understanding of the disease’s demographic profile, clinical characteristics, therapeutic methodologies, and socioeconomic repercussions.…”

Ocular Manifestations in Juvenile Behçet’s Disease: A Registry-Based Analysis from the AIDA Network

“…This study aims to characterize ocular manifestations of BD in the paediatric population through an in-depth analysis of data from a large international cohort, the Autoinflammatory Diseases Alliance (AIDA) Network BD registry (ClinicalTrials.gov ID NCT05200715) [ 22 ].…”

Behçet uveitis: Current practice and future perspectives

“…Today, the development of international registries dedicated to specific or rare autoimmune disease entities provides a powerful, structured multidisciplinary tool for data collection, disease identification, epidemiological studies on more current, evidence-based and multi-centric basis. One of these registries is the AIDA International Registry for BD patients, which is considered a successful model and is currently being developed and implemented for other diseases ( 5 ).…”