Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome
ObjectiveThe 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.MethodsThis Registry is a clin...
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| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-07-01
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| Series: | Frontiers in Medicine |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2022.926500/full |
| _version_ | 1811219316712931328 |
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| author | Antonio Vitale Valeria Caggiano Francesca Della Casa José Hernández-Rodríguez Micol Frassi Sara Monti Sara Monti Abdurrahman Tufan Salvatore Telesca Edoardo Conticini Gaafar Ragab Gaafar Ragab Giuseppe Lopalco Ibrahim Almaghlouth 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 Amato de Paulis Gerard Espinosa Armin Maier Gian Domenico Sebastiani Antonella Insalaco Farhad Shahram Paolo Sfriso Francesca Minoia Maria Alessio Joanna Makowska Gülen Hatemi Nurullah Akkoç Francesca Li Gobbi Antonio Gidaro Alma Nunzia Olivieri Sulaiman M. Al-Mayouf Sükran 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-Rózyk Gian Marco Tosi Francesca Crisafulli Alberto Balistreri Marília A. Dagostin Mahmoud Ghanema Carla Gaggiano Jurgen Sota Ilenia Di Cola Claudia Fabiani Henrique A. Mayrink Giardini Alessandra Renieri Alessandra Renieri Alessandra Renieri Alessandra Fabbiani Alessandra Fabbiani Alessandra Fabbiani Anna Carrer Anna Carrer Anna Carrer Monica Bocchia Federico Caroni Donato Rigante Donato Rigante Luca Cantarini |
| author_facet | Antonio Vitale Valeria Caggiano Francesca Della Casa José Hernández-Rodríguez Micol Frassi Sara Monti Sara Monti Abdurrahman Tufan Salvatore Telesca Edoardo Conticini Gaafar Ragab Gaafar Ragab Giuseppe Lopalco Ibrahim Almaghlouth 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 Amato de Paulis Gerard Espinosa Armin Maier Gian Domenico Sebastiani Antonella Insalaco Farhad Shahram Paolo Sfriso Francesca Minoia Maria Alessio Joanna Makowska Gülen Hatemi Nurullah Akkoç Francesca Li Gobbi Antonio Gidaro Alma Nunzia Olivieri Sulaiman M. Al-Mayouf Sükran 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-Rózyk Gian Marco Tosi Francesca Crisafulli Alberto Balistreri Marília A. Dagostin Mahmoud Ghanema Carla Gaggiano Jurgen Sota Ilenia Di Cola Claudia Fabiani Henrique A. Mayrink Giardini Alessandra Renieri Alessandra Renieri Alessandra Renieri Alessandra Fabbiani Alessandra Fabbiani Alessandra Fabbiani Anna Carrer Anna Carrer Anna Carrer Monica Bocchia Federico Caroni Donato Rigante Donato Rigante Luca Cantarini |
| author_sort | Antonio Vitale |
| collection | DOAJ |
| description | ObjectiveThe 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.MethodsThis 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.ResultsTo date (April 22nd, 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.ConclusionThis 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. This Project can be found on https://clinicaltrials.gov NCT05200715. |
| first_indexed | 2024-04-12T07:24:16Z |
| format | Article |
| id | doaj.art-d6cb39d414bf43bb9349ac3d14d635af |
| institution | Directory Open Access Journal |
| issn | 2296-858X |
| language | English |
| last_indexed | 2024-04-12T07:24:16Z |
| publishDate | 2022-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj.art-d6cb39d414bf43bb9349ac3d14d635af2022-12-22T03:42:14ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2022-07-01910.3389/fmed.2022.926500926500Development and Implementation of the AIDA International Registry for Patients With VEXAS SyndromeAntonio Vitale0Valeria Caggiano1Francesca Della Casa2José Hernández-Rodríguez3Micol Frassi4Sara Monti5Sara Monti6Abdurrahman Tufan7Salvatore Telesca8Edoardo Conticini9Gaafar Ragab10Gaafar Ragab11Giuseppe Lopalco12Ibrahim Almaghlouth13Ibrahim Almaghlouth14Rosa Maria R. Pereira15Derya Yildirim16Marco Cattalini17Achille Marino18Teresa Giani19Francesco La Torre20Piero Ruscitti21Emma Aragona22Ewa Wiesik-Szewczyk23Emanuela Del Giudice24Petros P. Sfikakis25Marcello Govoni26Giacomo Emmi27Maria Cristina Maggio28Roberto Giacomelli29Francesco Ciccia30Giovanni Conti31Djouher Ait-Idir32Claudia Lomater33Vito Sabato34Matteo Piga35Ali Sahin36Daniela Opris-Belinski37Ruxandra Ionescu38Elena Bartoloni39Franco Franceschini40Paola Parronchi41Amato de Paulis42Amato de Paulis43Gerard Espinosa44Armin Maier45Gian Domenico Sebastiani46Antonella Insalaco47Farhad Shahram48Paolo Sfriso49Francesca Minoia50Maria Alessio51Joanna Makowska52Gülen Hatemi53Nurullah Akkoç54Francesca Li Gobbi55Antonio Gidaro56Alma Nunzia Olivieri57Sulaiman M. Al-Mayouf58Sükran Erten59Stefano Gentileschi60Ibrahim Vasi61Maria Tarsia62Ayman Abdel-Monem Ahmed Mahmoud63Bruno Frediani64Musa Fares Alzahrani65Ahmed Hatem Laymouna66Francesca Ricci67Fabio Cardinale68Karina Jahnz-Rózyk69Gian Marco Tosi70Francesca Crisafulli71Alberto Balistreri72Marília A. Dagostin73Mahmoud Ghanema74Carla Gaggiano75Jurgen Sota76Ilenia Di Cola77Claudia Fabiani78Henrique A. Mayrink Giardini79Alessandra Renieri80Alessandra Renieri81Alessandra Renieri82Alessandra Fabbiani83Alessandra Fabbiani84Alessandra Fabbiani85Anna Carrer86Anna Carrer87Anna Carrer88Monica Bocchia89Federico Caroni90Donato Rigante91Donato Rigante92Luca Cantarini93Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalySection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, ItalyVasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer, University of Barcelona, Barcelona, SpainRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, ItalyRheumatology Department, IRCCS Policlinico S. Matteo Foundation, Pavia, ItalyDepartment of Experimental Medicine, University of Pavia, Pavia, ItalyDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, TurkeyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, EgyptFaculty of Medicine, Newgiza University (NGU), Giza, Egypt0Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy1Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia2College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia3Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, BrazilDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, Turkey4Pediatric Clinic, Spedali Civili di Brescia, University of Brescia, Brescia, Italy5Unit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy6Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy7Department of Pediatrics, Pediatric Rheumatology Center, Ospedale “Giovanni XXIII”, Azienda Ospedaliera-Universitaria Consorziale Policlinico, Bari, Italy8Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy9Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy0Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland1Department of Maternal Infantile and Urological Sciences, Polo Pontino, Sapienza University of Rome, Rome, Italy2Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece3Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna–Ferrara, University of Ferrara, Ferrara, Italy4Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy5University Department Pro.Sa.M.I. “G. D'Alessandro”, University of Palermo, Palermo, Italy6Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Selcetta, Italy7Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy8Pediatric Nephrology and Rheumatology Unit, AOU G Martino, Messina, Italy9Research Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria0Unità Operativa (UO) Reumatologia, AO Ordine Mauriziano, Turin, Italy1Department of Immunology, Allergology, and Rheumatology, Antwerp University Hospital, University of Antwerp, Antwerp, Belgium2Rheumatology Unit, Department of Medical Sciences, University and Azienda Ospedaliera-Universitaria of Cagliari, Cagliari, Italy3Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University, Sivas, Turkey4Department of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania4Department of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania5Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, ItalyRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, Italy4Department of Experimental and Clinical Medicine, University of Florence, Florence, ItalySection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy6Center for Basic and Clinical Immunology Research (CISI), WAO Center of Excellence, University of Naples Federico II, Naples, ItalyVasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer, University of Barcelona, Barcelona, Spain7Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy8Unità Operativa Complessa (U.O.C.) Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy9Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (European Reference Network for Immunodeficiency, Autoinflammatory and Autoimmune Diseases Center), Rome, Italy0Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran1Rheumatology Unit, Department of Medicine DIMED, University of Padova, Padova, Italy2Pediatric Rheumatology, Fondazione IRCCS (Istituto di ricovero e cura a carattere scientifico) Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy3Pediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy4Department of Rheumatology, Medical University of Lodz, Lodz, Poland5Division of Rheumatology, Department of Internal Medicine, Behçet's Disease Research Center, Istanbul University–Cerrahpasa, Istanbul, Turkey6Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey7Rheumatology Unit, San Giovanni di Dio Hospital, Firenze, Italy8Department of Biomedical and Clinical Sciences 'Luigi Sacco', University of Milan, Milan, Italy9Department of Woman, Child and of General and Specialized Surgery, University of Campania “Luigi Vanvitelli”, Naples, Italy0King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia1Department of Rheumatology, Ankara City Hospital, Ankara, Turkey2Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, ItalyDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, TurkeyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt2Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy3Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi ArabiaRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt4Pediatric Clinic, Spedali Civili di Brescia, University of Brescia, Brescia, Italy7Department of Pediatrics, Pediatric Rheumatology Center, Ospedale “Giovanni XXIII”, Azienda Ospedaliera-Universitaria Consorziale Policlinico, Bari, Italy0Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland4Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, ItalyRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, Italy5Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy3Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, BrazilRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, EgyptDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy8Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy4Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy3Rheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, Brazil6Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy7Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy8Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy6Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy7Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy8Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy6Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy7Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy8Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy9Unit of Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy9Unit of Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy0Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy1Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, ItalyDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, ItalyObjectiveThe 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.MethodsThis 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.ResultsTo date (April 22nd, 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.ConclusionThis 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. This Project can be found on https://clinicaltrials.gov NCT05200715.https://www.frontiersin.org/articles/10.3389/fmed.2022.926500/fullautoinflammatory diseasesclinical managementprecision medicinerare diseasesresearchtreatment |
| spellingShingle | Antonio Vitale Valeria Caggiano Francesca Della Casa José Hernández-Rodríguez Micol Frassi Sara Monti Sara Monti Abdurrahman Tufan Salvatore Telesca Edoardo Conticini Gaafar Ragab Gaafar Ragab Giuseppe Lopalco Ibrahim Almaghlouth 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 Amato de Paulis Gerard Espinosa Armin Maier Gian Domenico Sebastiani Antonella Insalaco Farhad Shahram Paolo Sfriso Francesca Minoia Maria Alessio Joanna Makowska Gülen Hatemi Nurullah Akkoç Francesca Li Gobbi Antonio Gidaro Alma Nunzia Olivieri Sulaiman M. Al-Mayouf Sükran 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-Rózyk Gian Marco Tosi Francesca Crisafulli Alberto Balistreri Marília A. Dagostin Mahmoud Ghanema Carla Gaggiano Jurgen Sota Ilenia Di Cola Claudia Fabiani Henrique A. Mayrink Giardini Alessandra Renieri Alessandra Renieri Alessandra Renieri Alessandra Fabbiani Alessandra Fabbiani Alessandra Fabbiani Anna Carrer Anna Carrer Anna Carrer Monica Bocchia Federico Caroni Donato Rigante Donato Rigante Luca Cantarini Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome Frontiers in Medicine autoinflammatory diseases clinical management precision medicine rare diseases research treatment |
| title | Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome |
| title_full | Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome |
| title_fullStr | Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome |
| title_full_unstemmed | Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome |
| title_short | Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome |
| title_sort | development and implementation of the aida international registry for patients with vexas syndrome |
| topic | autoinflammatory diseases clinical management precision medicine rare diseases research treatment |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2022.926500/full |
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