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

Antonio Vitale; Francesca Della Casa; Gaafar Ragab; Ibrahim A Almaghlouth; Giuseppe Lopalco; Rosa Maria Pereira; Silvana Guerriero; Marcello Govoni; Petros P Sfikakis; Roberto Giacomelli; Francesco Ciccia; Sara Monti; Piero Ruscitti; Matteo Piga; Claudia Lomater; Abdurrahman Tufan; Daniela Opris-Belinski; Giacomo Emmi; José Hernández-Rodríguez; Ali Şahin; Gian Domenico Sebastiani; Elena Bartoloni; Nurullah Akkoç; Özgül Soysal Gündüz; Marco Cattalini; Giovanni Conti; Gulen Hatemi; Armin Maier; Paola Parronchi; Emanuela Del Giudice; Sukran Erten; Antonella Insalaco; Francesca Li Gobbi; Maria Cristina Maggio; Farhad Shahram; Valeria Caggiano; Mohamed Tharwat Hegazy; Kazi Nur Asfina; Maria Morrone; Leandro L Prado; Rosanna Dammacco; Francesca Ruffilli; Aikaterini Arida; Luca Navarini; Ilenia Pantano; Lorenzo Cavagna; Alessandro Conforti; Alberto Cauli; Elena Maria Marucco; Hamit Kucuk; Ruxandra Ionescu; Irene Mattioli; Gerard Espinosa; Olga Araújo; Burak Karkaş; Claudia Canofari; Jurgen Sota; Ahmed Hatem Laymouna; Asma A Bedaiwi; Sergio Colella; Henrique Ayres M Giardini; Valeria Albano; Andrea Lo Monaco; George E Fragoulis; Riza Can Kardas; Virginia Berlengiero; Mohamed A Hussein; Francesca Ricci; Francesco La Torre; Donato Rigante; Ewa Więsik-Szewczyk; Micol Frassi; Stefano Gentileschi; Gian Marco Tosi; Marilia Ambiel Dagostin; Ayman Abdel-Monem Ahmed Mahmoud; Maria Tarsia; Giovanni Alessio; Rolando Cimaz; Teresa Giani; Carla Gaggiano; Florenzo Iannone; Paola Cipriani; Mariam Mourabi; Veronica Spedicato; Sara Barneschi; Emma Aragona; Alberto Balistreri; Bruno Frediani; Claudia Fabiani; Luca Cantarini; Autoinflammatory Diseases Alliance (AIDA) Network

doi:10.1007/s11739-022-03038-1

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

Journal article

Open access

Peer reviewed

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

Antonio Vitale, Francesca Della Casa, Gaafar Ragab, Ibrahim A Almaghlouth, Giuseppe Lopalco, Rosa Maria Pereira, Silvana Guerriero, Marcello Govoni, Petros P Sfikakis, Roberto Giacomelli, …

Internal and emergency medicine, Vol.17(7), pp.1977-1986

01/10/2022

DOI: https://doi.org/10.1007/s11739-022-03038-1

PMID: 35831701

Abstract

Adult

Behcet Syndrome - diagnosis

Behcet Syndrome - epidemiology

Behcet Syndrome - therapy

Child

Humans

Prospective Studies

Registries

Retrospective Studies

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.

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Title: Development and implementation of the AIDA International Registry for patients with Behçet's disease
Creators - without role: Antonio Vitale - University of Siena
Francesca Della Casa - University of Naples Federico II
Gaafar Ragab - Cairo University
Ibrahim A Almaghlouth - King Saud University
Giuseppe Lopalco - University of Bari Aldo Moro
Rosa Maria Pereira - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Silvana Guerriero - University of Bari Aldo Moro
Marcello Govoni - University of Ferrara
Petros P Sfikakis - National and Kapodistrian University of Athens
Roberto Giacomelli - Università Campus Bio-Medico
Francesco Ciccia - University of Campania "Luigi Vanvitelli"
Sara Monti - University of Pavia
Piero Ruscitti - University of L'Aquila
Matteo Piga - University of Cagliari
Claudia Lomater - University of Turin
Abdurrahman Tufan - Gazi University
Daniela Opris-Belinski - Carol Davila University of Medicine and Pharmacy
Giacomo Emmi - University of Florence
José Hernández-Rodríguez - Universitat de Barcelona
Ali Şahin - Sivas Cumhuriyet Üniversitesi
Gian Domenico Sebastiani - Ospedale generale di zona San Camillo Treviso
Elena Bartoloni - University of Perugia
Nurullah Akkoç - Manisa Celal Bayar University
Özgül Soysal Gündüz - Manisa Celal Bayar University
Marco Cattalini - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Giovanni Conti - University of Messina
Gulen Hatemi - Istanbul University-Cerrahpaşa
Armin Maier - Ospedale di Bolzano
Paola Parronchi - University of Florence
Emanuela Del Giudice - Sapienza University of Rome
Sukran Erten - Memorial Ankara Hospital
Antonella Insalaco - Bambino Gesù Children's Hospital
Francesca Li Gobbi - Florence
Maria Cristina Maggio - University of Palermo
Farhad Shahram - Shariati Hospital
Valeria Caggiano - University of Siena
Mohamed Tharwat Hegazy - Cairo University
Kazi Nur Asfina - King Saud University
Maria Morrone - University of Bari Aldo Moro
Leandro L Prado - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Rosanna Dammacco - University of Bari Aldo Moro
Francesca Ruffilli - University of Ferrara
Aikaterini Arida - National and Kapodistrian University of Athens
Luca Navarini - Università Campus Bio-Medico
Ilenia Pantano - University of Campania "Luigi Vanvitelli"
Lorenzo Cavagna - University of Pavia
Alessandro Conforti - University of L'Aquila
Alberto Cauli - University of Cagliari
Elena Maria Marucco - University of Turin
Hamit Kucuk - Gazi University
Ruxandra Ionescu - Carol Davila University of Medicine and Pharmacy
Irene Mattioli - University of Florence
Gerard Espinosa - Universitat de Barcelona
Olga Araújo - Universitat de Barcelona
Burak Karkaş - Sivas Cumhuriyet Üniversitesi
Claudia Canofari - Ospedale generale di zona San Camillo Treviso
Jurgen Sota - University of Siena
Ahmed Hatem Laymouna - Cairo University
Asma A Bedaiwi - King Saud University
Sergio Colella - University of Bari Aldo Moro
Henrique Ayres M Giardini - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Valeria Albano - University of Bari Aldo Moro
Andrea Lo Monaco - University of Ferrara
George E Fragoulis - National and Kapodistrian University of Athens
Riza Can Kardas - Gazi University
Virginia Berlengiero - University of Siena
Mohamed A Hussein - Cairo University
Francesca Ricci - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Francesco La Torre - Ospedale Pediatrico Giovanni XXIII
Donato Rigante - Università Cattolica del Sacro Cuore
Ewa Więsik-Szewczyk - Central Clinical Hospital
Micol Frassi - University of Brescia
Stefano Gentileschi - Azienda Ospedaliera Universitaria Senese
Gian Marco Tosi - University of Siena
Marilia Ambiel Dagostin - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Ayman Abdel-Monem Ahmed Mahmoud - Cairo University
Maria Tarsia - University of Siena
Giovanni Alessio - University of Bari Aldo Moro
Rolando Cimaz - University of Milan
Teresa Giani - University of Milan
Carla Gaggiano - University of Siena
Florenzo Iannone - University of Bari Aldo Moro
Paola Cipriani - University of L'Aquila
Mariam Mourabi - University of Siena
Veronica Spedicato - University of Bari Aldo Moro
Sara Barneschi - University of Siena
Emma Aragona - Ospedale Vincenzo Cervello
Alberto Balistreri - University of Siena
Bruno Frediani - Azienda Ospedaliera Universitaria Senese
Claudia Fabiani - University of Siena
Luca Cantarini - University of Siena
Autoinflammatory Diseases Alliance (AIDA) Network
Publication Details: Internal and emergency medicine, Vol.17(7), pp.1977-1986
Identifiers: 9946417708331
Academic Unit: King Saud University
Language: English
Resource Type: Journal article