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

Francesca Della Casa¹, Antonio Vitale², Silvana Guerriero³, Jurgen Sota², Rolando Cimaz⁴, Gaafar Ragab^{5

6}, Piero Ruscitti⁷, Rosa Maria R Pereira⁸, Francesca Minoia⁹, Emanuela Del Giudice¹⁰, Giacomo Emmi¹¹, Claudia Lomater¹², Sara Monti^{13

14}, Claudia Canofari¹⁵, Carla Gaggiano², Giovanni Alessio³, Elisabetta Miserocchi¹⁶, Alessandro Conforti⁷, Marilia A Dagostin⁸, Chiara Mapelli¹⁷, Maria Pia Paroli¹⁸, Veronica Parretti², Valeria Albano³, Rosa Favale³, Luca Marelli⁴, Mohamed Tharwat Hegazy^{5

6}, Paola Cipriani⁷, Isabele P B Antonelli⁸, Valeria Caggiano², Emma Aragona¹⁹, Ahmed Hatem Laymouna⁵, Gian Marco Tosi²⁰, Maria Tarsia², Marco Cattalini²¹, Francesco La Torre²², Giuseppe Lopalco²³, Ewa Więsik-Szewczyk²⁴, Micol Frassi²⁵, Stefano Gentileschi²⁶, Heitor F Giordano⁸, Bruno Frediani²⁶, Samuel K Shinjo⁸, Donato Rigante^{27

28}, Petros P Sfikakis²⁹, Alberto Balistreri³⁰, Mohamed A Hussein⁵, Rana Hussein Amin³¹, Luca Cantarini^#³², Claudia Fabiani^#²⁰; Autoinflammatory Diseases Alliance (AIDA) Network

Affiliations

¹ Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
² Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.
³ Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
⁴ Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy.
⁵ Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
⁶ Faculty of Medicine, Newgiza University (NGU), Cairo, Egypt.
⁷ Rheumatology Unit, Department of Biotechnological & Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
⁸ Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de Sao Paulo, São Paulo, Brazil.
⁹ Pediatric Rheumatology, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.
¹⁰ Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy.
¹¹ Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
¹² UO Reumatologia, AO Ordine Mauriziano, Turin, Italy.
¹³ Rheumatology Department, IRCCS Policlinico S. Matteo Foundation, Pavia, Italy.
¹⁴ Experimental Medicine, University of Pavia, Pavia, Italy.
¹⁵ U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Roma, Italy.
¹⁶ Department of Ophthalmology, San Raffaele Scientific Institute, IRCCS Ospedale San Raffaele, Vita-Salute San Raffaele University, Milan, Italy.
¹⁷ Ophthalmological Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy.
¹⁸ Uveitis Unit, Department of Sense Organs, Eye Clinic, Sapienza University of Rome, Rome, Italy.
¹⁹ Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
²⁰ Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
²¹ Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
²² Clinical Pediatrics, University of Bari, Bari, Italy.
²³ Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
²⁴ Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
²⁵ Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
²⁶ Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
²⁷ Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
²⁸ Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore, Rome, Italy.
²⁹ Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
³⁰ Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
³¹ Opthalmology Department, Faculty of Medicine, Cairo University, Giza, Egypt.
³² Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy. cantariniluca@hotmail.com.

^# Contributed equally.

PMID: 35099782
PMCID: PMC8927492
DOI: 10.1007/s40123-022-00459-1

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

Francesca Della Casa et al. Ophthalmol Ther. 2022 Apr.

. 2022 Apr;11(2):899-911.

doi: 10.1007/s40123-022-00459-1. Epub 2022 Jan 31.

Authors

Affiliations

¹ Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
² Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.
³ Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
⁴ Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy.
⁵ Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
⁶ Faculty of Medicine, Newgiza University (NGU), Cairo, Egypt.
⁷ Rheumatology Unit, Department of Biotechnological & Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
⁸ Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de Sao Paulo, São Paulo, Brazil.
⁹ Pediatric Rheumatology, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.
¹⁰ Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy.
¹¹ Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
¹² UO Reumatologia, AO Ordine Mauriziano, Turin, Italy.
¹³ Rheumatology Department, IRCCS Policlinico S. Matteo Foundation, Pavia, Italy.
¹⁴ Experimental Medicine, University of Pavia, Pavia, Italy.
¹⁵ U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Roma, Italy.
¹⁶ Department of Ophthalmology, San Raffaele Scientific Institute, IRCCS Ospedale San Raffaele, Vita-Salute San Raffaele University, Milan, Italy.
¹⁷ Ophthalmological Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy.
¹⁸ Uveitis Unit, Department of Sense Organs, Eye Clinic, Sapienza University of Rome, Rome, Italy.
¹⁹ Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
²⁰ Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
²¹ Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
²² Clinical Pediatrics, University of Bari, Bari, Italy.
²³ Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
²⁴ Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
²⁵ Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
²⁶ Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
²⁷ Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
²⁸ Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore, Rome, Italy.
²⁹ Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
³⁰ Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
³¹ Opthalmology Department, Faculty of Medicine, Cairo University, Giza, Egypt.
³² Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy. cantariniluca@hotmail.com.

^# Contributed equally.

PMID: 35099782
PMCID: PMC8927492
DOI: 10.1007/s40123-022-00459-1

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.

Keywords: Autoinflammatory diseases; Clinical management; Innovative biotechnologies; International registry; Personalised medicine; Precision medicine; Rare diseases; Uveitis.

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Figures

**Fig. 1**
Countries involved in the AIDA Network based on the number of centres for each country

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Figures

References

LinkOut - more resources

Full Text Sources