0000000000877226

AUTHOR

Serena Patroniti

showing 1 related works from this author

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
researchProduct