. 2022 Oct;17(7):1977-1986.

doi: 10.1007/s11739-022-03038-1. Epub 2022 Jul 14.

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

Antonio Vitale¹, Francesca Della Casa², Gaafar Ragab^{3

4}, Ibrahim A Almaghlouth^{5

6}, Giuseppe Lopalco⁷, Rosa Maria Pereira⁸, Silvana Guerriero⁹, Marcello Govoni¹⁰, Petros P Sfikakis¹¹, Roberto Giacomelli¹², Francesco Ciccia¹³, Sara Monti¹⁴, Piero Ruscitti¹⁵, Matteo Piga¹⁶, Claudia Lomater¹⁷, Abdurrahman Tufan¹⁸, Daniela Opris-Belinski¹⁹, Giacomo Emmi²⁰, José Hernández-Rodríguez²¹, Ali Şahin²², Gian Domenico Sebastiani²³, Elena Bartoloni²⁴, Nurullah Akkoç²⁵, Özgül Soysal Gündüz²⁵, Marco Cattalini²⁶, Giovanni Conti²⁷, Gulen Hatemi²⁸, Armin Maier²⁹, Paola Parronchi²⁰, Emanuela Del Giudice³⁰, Sukran Erten³¹, Antonella Insalaco³², Francesca Li Gobbi³³, Maria Cristina Maggio³⁴, Farhad Shahram³⁵, Valeria Caggiano¹, Mohamed Tharwat Hegazy^{3

4}, Kazi Nur Asfina⁶, Maria Morrone⁷, Leandro L Prado⁸, Rosanna Dammacco⁹, Francesca Ruffilli¹⁰, Aikaterini Arida¹¹, Luca Navarini¹², Ilenia Pantano¹³, Lorenzo Cavagna¹⁴, Alessandro Conforti¹⁵, Alberto Cauli¹⁶, Elena Maria Marucco¹⁷, Hamit Kucuk¹⁸, Ruxandra Ionescu¹⁹, Irene Mattioli²⁰, Gerard Espinosa²¹, Olga Araújo²¹, Burak Karkaş²², Claudia Canofari²³, Jurgen Sota¹, Ahmed Hatem Laymouna³, Asma A Bedaiwi⁵, Sergio Colella⁷, Henrique Ayres M Giardini⁸, Valeria Albano⁹, Andrea Lo Monaco¹⁰, George E Fragoulis¹¹, Riza Can Kardas¹⁸, Virginia Berlengiero¹, Mohamed A Hussein³, Francesca Ricci²⁶, Francesco La Torre³⁶, Donato Rigante^{37

38}, Ewa Więsik-Szewczyk³⁹, Micol Frassi⁴⁰, Stefano Gentileschi⁴¹, Gian Marco Tosi⁴², Marilia Ambiel Dagostin⁸, Ayman Abdel-Monem Ahmed Mahmoud³, Maria Tarsia¹, Giovanni Alessio⁹, Rolando Cimaz⁴³, Teresa Giani⁴³, Carla Gaggiano¹, Florenzo Iannone⁷, Paola Cipriani¹⁵, Mariam Mourabi¹, Veronica Spedicato⁷, Sara Barneschi¹, Emma Aragona⁴⁴, Alberto Balistreri⁴⁵, Bruno Frediani⁴¹, Claudia Fabiani^#⁴², Luca Cantarini^#⁴⁶; Autoinflammatory Diseases Alliance (AIDA) Network

Affiliations

¹ 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.
² Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
³ Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
⁴ Faculty of Medicine, Newgiza University (NGU), Giza, Egypt.
⁵ Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁶ College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁷ Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
⁸ Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.
⁹ Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
¹⁰ Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.
¹¹ Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
¹² Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.
¹³ Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.
¹⁴ Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy.
¹⁵ Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
¹⁶ Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.
¹⁷ AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.
¹⁸ Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey.
¹⁹ Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
²⁰ Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
²¹ Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.
²² Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey.
²³ U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.
²⁴ Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.
²⁵ Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey.
²⁶ Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
²⁷ Pediatric Nephrology Unit, AOU Policlinic "G Martino", University of Messina, Messina, Italy.
²⁸ Division of Rheumatology, Department of Internal Medicine and Behçet's Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey.
²⁹ Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.
³⁰ Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy.
³¹ Department of Rheumatology, Ankara City Hospital, Ankara, Turkey.
³² Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (ERN-RITA Center), Rome, Italy.
³³ Rheumatology Unit, San Giovanni di Dio Hospital, Florence, Italy.
³⁴ University Department Pro.Sa.M.I. "G. D'Alessandro", University of Palermo, Palermo, Italy.
³⁵ Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
³⁶ Department of Pediatrics, Ospedale "Giovanni XXIII", Pediatric Rheumatology Center, AOU Consorziale Policlinico, Bari, Italy.
³⁷ Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
³⁸ Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy.
³⁹ Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
⁴⁰ Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
⁴¹ Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
⁴² Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
⁴³ ASST G. Pini-CTO, Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.
⁴⁴ Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
⁴⁵ Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
⁴⁶ 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: 35831701
PMCID: PMC9522756
DOI: 10.1007/s11739-022-03038-1

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

Antonio Vitale et al. Intern Emerg Med. 2022 Oct.

. 2022 Oct;17(7):1977-1986.

doi: 10.1007/s11739-022-03038-1. Epub 2022 Jul 14.

Authors

Affiliations

¹ 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.
² Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
³ Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
⁴ Faculty of Medicine, Newgiza University (NGU), Giza, Egypt.
⁵ Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁶ College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁷ Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
⁸ Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.
⁹ Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
¹⁰ Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.
¹¹ Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
¹² Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.
¹³ Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.
¹⁴ Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy.
¹⁵ Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
¹⁶ Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.
¹⁷ AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.
¹⁸ Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey.
¹⁹ Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
²⁰ Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
²¹ Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.
²² Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey.
²³ U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.
²⁴ Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.
²⁵ Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey.
²⁶ Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
²⁷ Pediatric Nephrology Unit, AOU Policlinic "G Martino", University of Messina, Messina, Italy.
²⁸ Division of Rheumatology, Department of Internal Medicine and Behçet's Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey.
²⁹ Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.
³⁰ Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy.
³¹ Department of Rheumatology, Ankara City Hospital, Ankara, Turkey.
³² Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (ERN-RITA Center), Rome, Italy.
³³ Rheumatology Unit, San Giovanni di Dio Hospital, Florence, Italy.
³⁴ University Department Pro.Sa.M.I. "G. D'Alessandro", University of Palermo, Palermo, Italy.
³⁵ Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
³⁶ Department of Pediatrics, Ospedale "Giovanni XXIII", Pediatric Rheumatology Center, AOU Consorziale Policlinico, Bari, Italy.
³⁷ Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
³⁸ Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy.
³⁹ Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
⁴⁰ Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
⁴¹ Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
⁴² Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
⁴³ ASST G. Pini-CTO, Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.
⁴⁴ Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
⁴⁵ Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
⁴⁶ 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: 35831701
PMCID: PMC9522756
DOI: 10.1007/s11739-022-03038-1

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.

Keywords: Autoinflammatory diseases; Behçet’s disease; International registry; Precision medicine; Rare diseases; Uveitis.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

**Fig. 1**
Worldwide distribution of the AIDA Network on February 7rd, 2022

See this image and copyright information in PMC

Comment in

Registries of rare diseases: current knowledge and future perspectives.
Gelain E, Tesi M, Mazzariol M, Vaglio A. Gelain E, et al. Intern Emerg Med. 2023 Jan;18(1):19-21. doi: 10.1007/s11739-022-03151-1. Epub 2022 Nov 19. Intern Emerg Med. 2023. PMID: 36401715 No abstract available.

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

Comment in

References

Publication types

MeSH terms

Associated data

LinkOut - more resources

Full Text Sources

Medical