0000000000895236

AUTHOR

Mohamed Tharwat Hegazy

showing 4 related works from this author

The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

2022

ObjectiveThe present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network.MethodsThis is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner …

RegistrySettore MED/38 - Pediatria Generale E SpecialisticaSettore MED/16 - REUMATOLOGIAautoinflammatory diseaseprecision medicineAutoinflammatory diseasesrare diseasesHuman medicinepersonalized medicineGeneral Medicinerare diseases.autoinflammatory diseases; international registry; personalized medicine; precision medicine; rare diseasesinternational registry
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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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Efficacy and safety of tocilizumab in adult-onset Still's disease: Real-life experience from the international AIDA registry

2022

© 2022 Elsevier Inc.Background/objectives: Long-term efficacy and safety of tocilizumab (TCZ) in adult-onset Still's disease (AOSD) mostly derive from small case series. Herein we report a registry-based study investigating TCZ efficacy and safety in a cohort of patients with AOSD evaluated by clinical and serum inflammatory markers as well as drug retention rate analysis. Methods: This is an international multicentre study analyzing data from patients with AOSD regularly enrolled in the AIDA registry. TCZ efficacy was evaluated between baseline and last follow-up assessment in terms of changes in the Pouchot score and laboratory findings. Drug-retention rate was estimated by the Kaplan-Mei…

RegistrieAdultMaleSettore MED/16 - REUMATOLOGIAInterleukin-6Innovative biotechnologiesTocilizumabAdult-onset Still's diseaseAntibodies Monoclonal HumanizedPersonalized medicineAdult-onset Still's disease; Innovative biotechnologies; Interleukin-6; Personalized medicine; TocilizumabSettore MED/38 - Pediatria Generale E SpecialisticaAnesthesiology and Pain MedicineRheumatologyInnovative biotechnologieStill's diseaseHumansFemaleRegistriesImmunotherapyTocilizumab.Still's Disease Adult-OnsetHuman
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Musculoskeletal manifestations in children with Behçet's syndrome: data from the AIDA Network Behçet's Syndrome Registry

2023

AbstractThis study aims to describe musculoskeletal manifestations (MSM) in children with Behçet’s syndrome (BS), their association with other disease manifestations, response to therapy, and long-term prognosis. Data were retrieved from the AIDA Network Behçet’s Syndrome Registry. Out of a total of 141 patients with juvenile BS, 37 had MSM at disease onset (26.2%). The median age at onset was 10.0 years (IQR 7.7). The median follow-up duration was 21.8 years (IQR 23.3). Recurrent oral (100%) and genital ulcers (67.6%) and pseudofolliculitis (56.8%) were the most common symptoms associated with MSM. At disease onset, 31 subjects had arthritis (83.8%), 33 arthralgia (89.2%), and 14 myalgia (…

Settore MED/16 - REUMATOLOGIABehçet's diseaseBehçet’s syndromeArthritisArthritis; Behçet’s syndrome; International registry; Pediatric rheumatology; Rare diseasesRare diseasesSettore MED/38 - Pediatria Generale E SpecialisticaArthritis Behçet’s syndrome International registry Pediatric rheumatology Rare diseasesInternational registryEmergency MedicineInternal MedicineAutoinflammationPediatric rheumatologyArthriti
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