0000000000381435

AUTHOR

Antonio Gidaro

showing 2 related works from this author

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

2022

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, thu…

RegistryKeywords: autoinflammatory diseases; clinical management; precision medicine; rare diseases; research; treatment.Settore MED/16 - REUMATOLOGIAresearchtreatmentprecision medicinerare diseasesrare diseaseGeneral Medicineautoinflammatory diseasestreatment.Settore MED/38 - Pediatria Generale E Specialisticaautoinflammatory diseaseVEXAS syndromeclinical managementHuman medicineKeywords: autoinflammatory diseases
researchProduct

Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome.

2022

ObjectiveThe present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.MethodsThis is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other…

RegistrySettore MED/38 - Pediatria Generale E SpecialisticaSchnitzler syndromeSettore MED/16 - REUMATOLOGIAautoinflammatory diseasebiotherapiesbiotherapierare diseaseGeneral Medicineautoinflammatory disease; biotherapies; interleukin-1; international registry; personalized medicine; rare diseasepersonalized medicineinternational registryinterleukin-1Frontiers in medicine
researchProduct