0000000000355539

AUTHOR

Sergio Colella

showing 3 related works from this author

Development and implementation of the AIDA international registry for patients with Still's disease

2022

ObjectiveAim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder.MethodsThis Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management. The co…

RegistrySettore MED/16 - REUMATOLOGIAresearchtreatmentprecision medicinerare diseasesGeneral Medicinepersonalized medicineautoinflammatory diseasesSettore MED/38 - Pediatria Generale E Specialisticaautoinflammatory diseases personalized medicine precision medicine rare diseases research treatmentStill's diseaseautoinflammatory diseases; personalized medicine; precision medicine; rare diseases; research; treatmentHuman medicine
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Development and implementation of the AIDA International Registry for patients with Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Ad…

2022

ObjectiveAim of this paper is to illustrate the methodology, design, and development of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to patients with the Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) syndrome.MethodsThis is a physician-driven, non-population- and electronic-based registry proposed to gather real-world demographics, clinical, laboratory, instrumental and socioeconomic data from PFAPA patients. Data recruitment is realized through the on-line Research Electronic Data Capture (REDCap) tool. This registry is thought to collect standardized information for clinical research leading to solid real-life evidence. Th…

Registryrare disease.PFAPA syndrome; autoinflammatory diseases; international registry; personalized medicine; precision medicine; rare diseaseprecision medicinerare diseaseautoinflammatory diseases; international registry; personalized medicine; PFAPA syndrome; precision medicine; rare diseasepersonalized medicineautoinflammatory diseasesSettore MED/38 - PEDIATRIA GENERALE E SPECIALISTICAautoinflammatory diseasePediatrics Perinatology and Child HealthHuman medicineinternational registryPFAPA syndrome
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Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

2022

ObjectiveThis paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs).MethodsThis is an electronic registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions an…

RegistrySettore MED/16 - REUMATOLOGIAprecision medicinerare diseasesGeneral Medicinepersonalized medicineautoinflammatory diseasesInternational RegistrySettore MED/38 - Pediatria Generale E Specialisticaautoinflammatory diseaseAutoinflammationHuman medicineInternational Registry; autoinflammatory diseases; personalized medicine; precision medicine; rare diseasesautoinflammatory diseases; International Registry; personalized medicine; precision medicine; rare diseases
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