0000000000729945

AUTHOR

Veronica Parretti

showing 2 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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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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