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

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dc.contributor.authorVitale A.
dc.contributor.authorCaggiano V.
dc.contributor.authorDella Casa F.
dc.contributor.authorHernández-Rodríguez J.
dc.contributor.authorFrassi M.
dc.contributor.authorMonti S.
dc.contributor.authorTufan A.
dc.contributor.authorTelesca S.
dc.contributor.authorConticini E.
dc.contributor.authorRagab G.
dc.contributor.authorLopalco G.
dc.contributor.authorAlmaghlouth I.
dc.contributor.authorPereira R.M.R.
dc.contributor.authorYildirim D.
dc.contributor.authorCattalini M.
dc.contributor.authorMarino A.
dc.contributor.authorGiani T.
dc.contributor.authorLa Torre F.
dc.contributor.authorRuscitti P.
dc.contributor.authorAragona E.
dc.contributor.authorWiesik-Szewczyk E.
dc.contributor.authorDel Giudice E.
dc.contributor.authorSfikakis P.P.
dc.contributor.authorGovoni M.
dc.contributor.authorEmmi G.
dc.contributor.authorMaggio M.C.
dc.contributor.authorGiacomelli R.
dc.contributor.authorCiccia F.
dc.contributor.authorConti G.
dc.contributor.authorAit-Idir D.
dc.contributor.authorLomater C.
dc.contributor.authorSabato V.
dc.contributor.authorPiga M.
dc.contributor.authorSahin A.
dc.contributor.authorOpris-Belinski D.
dc.contributor.authorIonescu R.
dc.contributor.authorBartoloni E.
dc.contributor.authorFranceschini F.
dc.contributor.authorParronchi P.
dc.contributor.authorde Paulis A.
dc.contributor.authorEspinosa G.
dc.contributor.authorMaier A.
dc.contributor.authorSebastiani G.D.
dc.contributor.authorInsalaco A.
dc.contributor.authorShahram F.
dc.contributor.authorSfriso P.
dc.contributor.authorMinoia F.
dc.contributor.authorAlessio M.
dc.contributor.authorMakowska J.
dc.contributor.authorHatemi G.
dc.contributor.authorAkkoç N.
dc.contributor.authorLi Gobbi F.
dc.contributor.authorGidaro A.
dc.contributor.authorOlivieri A.N.
dc.contributor.authorAl-Mayouf S.M.
dc.contributor.authorErten S.
dc.contributor.authorGentileschi S.
dc.contributor.authorVasi I.
dc.contributor.authorTarsia M.
dc.contributor.authorMahmoud A.A.-M.A.
dc.contributor.authorFrediani B.
dc.contributor.authorFares Alzahrani M.
dc.contributor.authorLaymouna A.H.
dc.contributor.authorRicci F.
dc.contributor.authorCardinale F.
dc.contributor.authorJahnz-Rózyk K.
dc.contributor.authorTosi G.M.
dc.contributor.authorCrisafulli F.
dc.contributor.authorBalistreri A.
dc.contributor.authorDagostin M.A.
dc.contributor.authorGhanema M.
dc.contributor.authorGaggiano C.
dc.contributor.authorSota J.
dc.contributor.authorDi Cola I.
dc.contributor.authorFabiani C.
dc.contributor.authorGiardini H.A.M.
dc.contributor.authorRenieri A.
dc.contributor.authorFabbiani A.
dc.contributor.authorCarrer A.
dc.contributor.authorBocchia M.
dc.contributor.authorCaroni F.
dc.contributor.authorRigante D.
dc.contributor.authorCantarini L.
dc.date.accessioned2024-07-22T08:04:21Z
dc.date.available2024-07-22T08:04:21Z
dc.date.issued2022
dc.description.abstractObjective: 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 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. 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. Copyright © 2022 Vitale, Caggiano, Della Casa, Hernández-Rodríguez, Frassi, Monti, Tufan, Telesca, Conticini, Ragab, Lopalco, Almaghlouth, Pereira, Yildirim, Cattalini, Marino, Giani, La Torre, Ruscitti, Aragona, Wiesik-Szewczyk, Del Giudice, Sfikakis, Govoni, Emmi, Maggio, Giacomelli, Ciccia, Conti, Ait-Idir, Lomater, Sabato, Piga, Sahin, Opris-Belinski, Ionescu, Bartoloni, Franceschini, Parronchi, de Paulis, Espinosa, Maier, Sebastiani, Insalaco, Shahram, Sfriso, Minoia, Alessio, Makowska, Hatemi, Akkoç, Li Gobbi, Gidaro, Olivieri, Al-Mayouf, Erten, Gentileschi, Vasi, Tarsia, Mahmoud, Frediani, Fares Alzahrani, Laymouna, Ricci, Cardinale, Jahnz-Rózyk, Tosi, Crisafulli, Balistreri, Dagostin, Ghanema, Gaggiano, Sota, Di Cola, Fabiani, Giardini, Renieri, Fabbiani, Carrer, Bocchia, Caroni, Rigante and Cantarini.
dc.identifier.DOI-ID10.3389/fmed.2022.926500
dc.identifier.issn2296858X
dc.identifier.urihttp://akademikarsiv.cbu.edu.tr:4000/handle/123456789/12668
dc.language.isoEnglish
dc.publisherFrontiers Media S.A.
dc.rightsAll Open Access; Gold Open Access
dc.subjectArticle
dc.subjectautoinflammatory disease
dc.subjectbone marrow biopsy
dc.subjectcardiovascular risk
dc.subjectclinical practice
dc.subjectclinical research
dc.subjectcomorbidity
dc.subjectfollow up
dc.subjectgene
dc.subjecthealth care access
dc.subjecthuman
dc.subjectpatient-reported outcome
dc.subjectpersonalized medicine
dc.subjectrare disease
dc.subjectregister
dc.subjectretrospective study
dc.subjectskin biopsy
dc.subjectsocial status
dc.subjectsomatic mutation
dc.subjectuba1 gene
dc.subjectVacuoles E1 enzyme X linked Autoinflammatory Somatic syndrome
dc.titleDevelopment and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome
dc.typeArticle

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