Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

Antonio Vitale; Valeria Caggiano; Francesca Della Casa; Jose Hernandez-Rodriguez; Micol Frassi; Sara Monti; Abdurrahman Tufan; Salvatore Telesca; Edoardo Conticini; Gaafar Ragab; Giuseppe Lopalco; Ibrahim Almaghlouth; Rosa Maria R. Pereira; Derya Yildirim; Marco Cattalini; Achille Marino; Teresa Giani; Francesco La Torre; Piero Ruscitti; Emma Aragona; Ewa Wiesik-Szewczyk; Emanuela Del Giudice; Petros P. Sfikakis; Marcello Govoni; Giacomo Emmi; Maria Cristina Maggio; Roberto Giacomelli; Francesco Ciccia; Giovanni Conti; Djouher Ait-Idir; Claudia Lomater; Vito Sabato; Matteo Piga; Ali Sahin; Daniela Opris-Belinski; Ruxandra Ionescu; Elena Bartoloni; Franco Franceschini; Paola Parronchi; Amato de Paulis; Gerard Espinosa; Armin Maier; Gian Domenico Sebastiani; Antonella Insalaco; Farhad Shahram; Paolo Sfriso; Francesca Minoia; Maria Alessio; Joanna Makowska; Gulen Hatemi; Nurullah Akkoc; Francesca Li Gobbi; Antonio Gidaro; Alma Nunzia Olivieri; Sulaiman M. Al-Mayouf; Sukran Erten; Stefano Gentileschi; Ibrahim Vasi; Maria Tarsia; Ayman Abdel-Monem Ahmed Mahmoud; Bruno Frediani; Musa Fares Alzahrani; Ahmed Hatem Laymouna; Francesca Ricci; Fabio Cardinale; Karina Jahnz-Rozyk; Gian Marco Tosi; Francesca Crisafulli; Alberto Balistreri; Marilia A. Dagostin; Mahmoud Ghanema; Carla Gaggiano; Jurgen Sota; Ilenia Di Cola; Claudia Fabiani; Henrique A. Mayrink Giardini; Alessandra Renieri; Alessandra Fabbiani; Anna Carrer; Monica Bocchia; Federico Caroni; Donato Rigante; Luca Cantarini

doi:10.3389/fmed.2022.926500

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Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

Journal article

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Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

Antonio Vitale, Valeria Caggiano, Francesca Della Casa, Jose Hernandez-Rodriguez, Micol Frassi, Sara Monti, Abdurrahman Tufan, Salvatore Telesca, Edoardo Conticini, Gaafar Ragab, …

Frontiers in medicine, Vol.9, pp.926500-926500

11/07/2022

DOI: https://doi.org/10.3389/fmed.2022.926500

PMID: 35899212

Abstract

General & Internal Medicine

Life Sciences & Biomedicine

Medicine, General & Internal

Science & Technology

Objective: The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) international Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods: This Registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients' management. The Registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, thus enhancing international collaboration and data sharing for research purposes. The Registry is practical enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 22(nd), 2022), 113 Centers from 23 Countries in 4 continents have been involved; 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) are currently able to access the registry for data entry (or data sharing) and collection. The Registry includes 4,952 fields organized into 18 instruments designed to fully describe patient's details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusion: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease, with the final goal to obtain real-world evidence for daily clinical practice, especially in relation to the comprehension of this disease about the natural history and the possible therapeutic approaches.

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Title: Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome
Creators - without role: Antonio Vitale - University of Siena
Valeria Caggiano - University of Siena
Francesca Della Casa - University of Naples Federico II
Jose Hernandez-Rodriguez - Universitat de Barcelona
Micol Frassi - University of Brescia
Sara Monti - Policlinico San Matteo Fondazione
Abdurrahman Tufan - Gazi University
Salvatore Telesca - University of Siena
Edoardo Conticini - University of Siena
Gaafar Ragab - Cairo University
Giuseppe Lopalco - University of Bari Aldo Moro
Ibrahim Almaghlouth - King Saud University
Rosa Maria R. Pereira - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Derya Yildirim - Gazi University
Marco Cattalini - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Achille Marino - Istituto Ortopedico Gaetano Pini
Teresa Giani - University of Milan
Francesco La Torre - Ospedale Pediatrico Giovanni XXIII
Piero Ruscitti - Univ Aquila, Dept Biotechnol & Appl Clin Sci, Rheumatol Unit, Laquila, Italy
Emma Aragona - Ospedale Vincenzo Cervello
Ewa Wiesik-Szewczyk - Central Clinical Hospital
Emanuela Del Giudice - Sapienza University of Rome
Petros P. Sfikakis - National and Kapodistrian University of Athens
Marcello Govoni - University of Ferrara
Giacomo Emmi - University of Florence
Maria Cristina Maggio - University of Palermo
Roberto Giacomelli - Università Campus Bio-Medico
Francesco Ciccia - University of Campania "Luigi Vanvitelli"
Giovanni Conti - Azienda Ospedaliera Universitaria Policlinico "G. Martino"
Djouher Ait-Idir - University of Boumerdes
Claudia Lomater - A. O. Ordine Mauriziano di Torino
Vito Sabato - Antwerp University Hospital
Matteo Piga - Azienda Ospedaliero-Universitaria Cagliari
Ali Sahin - Sivas Cumhuriyet Üniversitesi
Daniela Opris-Belinski - Carol Davila University of Medicine and Pharmacy
Ruxandra Ionescu - Carol Davila University of Medicine and Pharmacy
Elena Bartoloni - University of Perugia
Franco Franceschini - University of Brescia
Paola Parronchi - University of Florence
Amato de Paulis - University of Naples Federico II
Gerard Espinosa - Universitat de Barcelona
Armin Maier - Ospedale di Bolzano
Gian Domenico Sebastiani - Ospedale generale di zona San Camillo Treviso
Antonella Insalaco - Bambino Gesù Children's Hospital
Farhad Shahram - Shariati Hospital
Paolo Sfriso - University of Padua
Francesca Minoia - Istituti di Ricovero e Cura a Carattere Scientifico
Maria Alessio - University of Naples Federico II
Joanna Makowska - Medical University of Lodz
Gulen Hatemi - Istanbul University-Cerrahpaşa
Nurullah Akkoc - Manisa Celal Bayar University
Francesca Li Gobbi - Florence
Antonio Gidaro - Luigi Sacco Hospital
Alma Nunzia Olivieri - University of Campania "Luigi Vanvitelli"
Sulaiman M. Al-Mayouf - King Faisal Specialist Hospital & Research Centre
Sukran Erten - Memorial Ankara Hospital
Stefano Gentileschi - Azienda Ospedaliera Universitaria Senese
Ibrahim Vasi - Gazi University
Maria Tarsia - University of Siena
Ayman Abdel-Monem Ahmed Mahmoud - Cairo University
Bruno Frediani - Azienda Ospedaliera Universitaria Senese
Musa Fares Alzahrani - King Saud University
Ahmed Hatem Laymouna - Cairo University
Francesca Ricci - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Fabio Cardinale - Ospedale Pediatrico Giovanni XXIII
Karina Jahnz-Rozyk - Central Clinical Hospital
Gian Marco Tosi - University of Siena
Francesca Crisafulli - University of Brescia
Alberto Balistreri - University of Siena
Marilia A. Dagostin - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Mahmoud Ghanema - Cairo University
Carla Gaggiano - University of Siena
Jurgen Sota - University of Siena
Ilenia Di Cola - University of L'Aquila
Claudia Fabiani - University of Siena
Henrique A. Mayrink Giardini - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Alessandra Renieri - University of Siena
Alessandra Fabbiani - University of Siena
Anna Carrer - University of Siena
Monica Bocchia - Azienda Ospedaliera Universitaria Senese
Federico Caroni - Azienda Ospedaliera Universitaria Senese
Donato Rigante - Università Cattolica del Sacro Cuore
Luca Cantarini - University of Siena
Publication Details: Frontiers in medicine, Vol.9, pp.926500-926500
Publisher: Frontiers Media Sa
Number of pages: 9
Identifiers: 9913500008331
Academic Unit: King Faisal University; Alfaisal University; King Saud University
Language: English
Resource Type: Journal article