ArticleFrontiers in medicine2022
Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome.
Registry-linked trialAbstract read
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Article in Frontiers in medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05200715 (Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis), which is not on this map. Cited by 15 papers.
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15citing papers in PubMed
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What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis
Who cites it
15 citing papers in PubMed.
- Ophthalmic involvement in VEXAS syndrome and its influence on mortality: insights from the international AIDA network registry.Frontiers in immunology · 2026Article
- Recurrent fever and association with severe organ involvement, mortality and treatment outcomes in VEXAS syndrome: data from the AIDA Network.Frontiers in immunology · 2026Article
- Efficacy and safety of conventional disease-modifying antirheumatic drugs in VEXAS syndrome: real-world data from the international AIDA network.Frontiers in pharmacology · 2025Article
- Clinical and laboratory markers to distinguish VEXAS from Schnitzler's syndrome: data from the AIDA network registries.Frontiers in medicine · 2025Article
- Development and implementation of the International AIDA Network Castleman's disease registry.Frontiers in medicine · 2025Article
- VEXAS syndrome in rheumatology practice: features from a multicenter cohort in north-east Italy.Frontiers in immunology · 2025Article
- Development and implementation of the international AIDA network spondylarthritis registry.Frontiers in medicine · 2025Article
- Efficacy and safety profile of biotechnological agents and Janus kinase inhibitors in VEXAS syndrome: data from the international AIDA Network VEXAS registry.Frontiers in pharmacology · 2025Article
- Knowledge and Current Practices in Monogenic Uveitis: An International Survey by IUSG and AIDA Network.Ophthalmology and therapy · 2024Article
- Case report: VEXAS as an example of autoinflammatory syndrome in pulmonology clinical practice.Frontiers in medicine · 2024Article
- VEXAS syndrome: Current clinical, diagnostic and treatment approaches.Intractable & rare diseases research · 2023Review
- VEXAS syndrome: a new paradigm for adult-onset monogenic autoinflammatory diseases.Internal and emergency medicine · 2023Review
- VEXAS syndrome: a newly discovered systemic rheumatic disorder.Reumatologia · 2023Review
- VEXAS syndrome: an adult-onset monogenic autoinflammatory disease with many unanswered questions.Reumatologia · 2023Article
- A case of VEXAS syndrome (vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic) with decreased oxidative stress levels after oral prednisone and tocilizumab treatment.Frontiers in medicine · 2022Article
Corrections and comments
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Authors and funding
83 authors.
Antonio VitaleDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Valeria CaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Francesca Della CasaSection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
José Hernández-RodríguezVasculitis 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, Spain.
Micol FrassiRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, Italy.
Sara MontiRheumatology Department, IRCCS Policlinico S. Matteo Foundation, Pavia, Italy.
Abdurrahman TufanDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, Turkey.
Salvatore TelescaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Edoardo ConticiniDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Gaafar RagabRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Giuseppe LopalcoRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Ibrahim AlmaghlouthRheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Rosa Maria R PereiraRheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, Brazil.
Derya YildirimDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, Turkey.
Marco CattaliniPediatric Clinic, Spedali Civili di Brescia, University of Brescia, Brescia, Italy.
Achille MarinoUnit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy.
Teresa GianiDepartment of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy.
Francesco La TorreDepartment of Pediatrics, Pediatric Rheumatology Center, Ospedale "Giovanni XXIII", Azienda Ospedaliera-Universitaria Consorziale Policlinico, Bari, Italy.
Piero RuscittiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Emma AragonaDivision of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
Ewa Wiesik-SzewczykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Emanuela Del GiudiceDepartment of Maternal Infantile and Urological Sciences, Polo Pontino, Sapienza University of Rome, Rome, Italy.
Petros P SfikakisJoint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
Marcello GovoniRheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.
Giacomo EmmiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Maria Cristina MaggioUniversity Department Pro.Sa.M.I. "G. D'Alessandro", University of Palermo, Palermo, Italy.
Roberto GiacomelliRheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Selcetta, Italy.
Francesco CicciaDepartment of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.
Giovanni ContiPediatric Nephrology and Rheumatology Unit, AOU G Martino, Messina, Italy.
Djouher Ait-IdirResearch Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria.
Claudia LomaterUnità Operativa (UO) Reumatologia, AO Ordine Mauriziano, Turin, Italy.
Vito SabatoDepartment of Immunology, Allergology, and Rheumatology, Antwerp University Hospital, University of Antwerp, Antwerp, Belgium.
Matteo PigaRheumatology Unit, Department of Medical Sciences, University and Azienda Ospedaliera-Universitaria of Cagliari, Cagliari, Italy.
Ali SahinDivision of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University, Sivas, Turkey.
Daniela Opris-BelinskiDepartment of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
Ruxandra IonescuDepartment of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
Elena BartoloniRheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.
Franco FranceschiniRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, Italy.
Paola ParronchiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Amato de PaulisSection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
Gerard EspinosaVasculitis 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, Spain.
Armin MaierRheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.
Gian Domenico SebastianiUnità Operativa Complessa (U.O.C.) Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.
Antonella InsalacoDivision of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (European Reference Network for Immunodeficiency, Autoinflammatory and Autoimmune Diseases Center), Rome, Italy.
Farhad ShahramBehcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
Paolo SfrisoRheumatology Unit, Department of Medicine DIMED, University of Padova, Padova, Italy.
Francesca MinoiaPediatric Rheumatology, Fondazione IRCCS (Istituto di ricovero e cura a carattere scientifico) Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.
Maria AlessioPediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
Joanna MakowskaDepartment of Rheumatology, Medical University of Lodz, Lodz, Poland.
Gülen HatemiDivision of Rheumatology, Department of Internal Medicine, Behçet's Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey.
Nurullah AkkoçDivision of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey.
Francesca Li GobbiRheumatology Unit, San Giovanni di Dio Hospital, Firenze, Italy.
Antonio GidaroDepartment of Biomedical and Clinical Sciences 'Luigi Sacco', University of Milan, Milan, Italy.
Alma Nunzia OlivieriDepartment of Woman, Child and of General and Specialized Surgery, University of Campania "Luigi Vanvitelli", Naples, Italy.
Sulaiman M Al-MayoufKing Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Sükran ErtenDepartment of Rheumatology, Ankara City Hospital, Ankara, Turkey.
Stefano GentileschiUnit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
Ibrahim VasiDepartment of Internal Medicine and Rheumatology, Gazi University, Ankara, Turkey.
Maria TarsiaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Ayman Abdel-Monem Ahmed MahmoudRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Bruno FredianiUnit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
Musa Fares AlzahraniDepartment of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Ahmed Hatem LaymounaRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Francesca RicciPediatric Clinic, Spedali Civili di Brescia, University of Brescia, Brescia, Italy.
Fabio CardinaleDepartment of Pediatrics, Pediatric Rheumatology Center, Ospedale "Giovanni XXIII", Azienda Ospedaliera-Universitaria Consorziale Policlinico, Bari, Italy.
Karina Jahnz-RózykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Gian Marco TosiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Francesca CrisafulliRheumatology and Clinical Immunology Unit, Department of Clinical and Experimental Sciences, ASST Spedali Civili, University of Brescia, Brescia, Italy.
Alberto BalistreriBioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Marília A DagostinRheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, Brazil.
Mahmoud GhanemaRheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Carla GaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Jurgen SotaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Ilenia Di ColaRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Claudia FabianiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Henrique A Mayrink GiardiniRheumatology Division, Faculdade de Medicina, Hospital das Clínicas HCFMUSP, Universidade de São Paulo, São Paulo, Brazil.
Alessandra RenieriMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Alessandra FabbianiMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Anna CarrerMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Monica BocchiaUnit of Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy.
Federico CaroniUnit of Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy.
Donato RiganteDepartment of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Luca CantariniDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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 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. This Project can be found on https://clinicaltrials.gov NCT05200715.
Indexed as
autoinflammatory diseasesclinical managementprecision medicinerare diseasesresearchtreatment
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Registered trials
NCT05200715ClinicalTrials.gov
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.