Browsing by Author "Della Casa, F"

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    Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome
    Vitale, A; Caggiano, V; Della Casa, F; Hernandez-Rodriguez, J; Frassi, M; Monti, S; Tufan, A; Telesca, S; Conticini, E; Ragab, G; Lopalco, G; Almaghlouth, I; Pereira, RMR; Yildirim, D; Cattalini, M; Marino, A; Giani, T; La Torre, F; Ruscitti, P; Aragona, E; Wiesik-Szewczyk, E; Del Giudice, E; Sfikakis, PP; Govoni, M; Emmi, G; Maggio, MC; Giacomelli, R; Ciccia, F; Conti, G; Ait-Idir, D; Lomater, C; Sabato, V; Piga, M; Sahin, A; Opris-Belinski, D; Ionescu, R; Bartoloni, E; Franceschini, F; Parronchi, P; de Paulis, A; Espinosa, G; Maier, A; Sebastiani, GD; Insalaco, A; Shahram, F; Sfriso, P; Minoia, F; Alessio, M; Makowska, J; Hatemi, G; Akkoc, N; Li Gobbi, F; Gidaro, A; Olivieri, AN; Al-Mayouf, SM; Erten, S; Gentileschi, S; Vasi, I; Tarsia, M; Mahmoud, AAMA; Frediani, B; Alzahrani, MF; Laymouna, AH; Ricci, F; Cardinale, F; Jahnz-Rozyk, K; Tosi, GM; Crisafulli, F; Balistreri, A; Dagostin, MA; Ghanema, M; Gaggiano, C; Sota, J; Di Cola, I; Fabiani, C; Giardini, HAM; Renieri, A; Fabbiani, A; Carrer, A; Bocchia, M; Caroni, F; Rigante, D; Cantarini, L
    Objective: The 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. Methods: This 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, thus enhancing international collaboration and data sharing for research purposes. The Registry is practical enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 22(nd), 2022), 113 Centers from 23 Countries in 4 continents have been involved; 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) are currently able to access the registry for data entry (or data sharing) and collection. The Registry includes 4,952 fields organized into 18 instruments designed to fully describe patient's details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusion: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease, with the final goal to obtain real-world evidence for daily clinical practice, especially in relation to the comprehension of this disease about the natural history and the possible therapeutic approaches.
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    Development and implementation of the AIDA International Registry for patients with Behcet's disease
    Vitale, A; Della Casa, F; Ragab, G; Almaghlouth, IA; Lopalco, G; Pereira, RM; Guerriero, S; Govoni, M; Sfikakis, PP; Giacomelli, R; Ciccia, F; Monti, S; Ruscitti, P; Piga, M; Lomater, C; Tufan, A; Opris-Belinski, D; Emmi, G; Hernández-Rodríguez, J; Karkas, B; Sebastiani, GD; Bartoloni, E; Akkoç, N; Cattalini, M; Conti, G; Hatemi, G; Maier, A; Parronchi, P; Del Giudice, E; Erten, S; Insalaco, A; Li Gobbi, F; Maggio, MC; Shahram, F; Caggiano, V; Hegazy, MT; Asfina, KN; Morrone, M; Prado, LL; Dammacco, R; Ruffilli, F; Arida, A; Navarini, L; Pantano, I; Cavagna, L; Conforti, A; Cauli, A; Marucco, EM; Kucuk, H; Ionescu, R; Mattioli, I; Espinosa, G; Araújo, O; Canofari, C; Sota, J; Laymouna, AH; Bedaiwi, AA; Colella, S; Giardini, HAM; Albano, V; Lo Monaco, A; Fragoulis, GE; Kardas, RC; Berlengiero, V; Hussein, MA; Ricci, F; La Torre, F; Rigante, D; Wiesik-Szewczyk, E; Frassi, M; Gentileschi, S; Tosi, GM; Dagostin, MA; Mahmoud, AAMA; Tarsia, M; Alessio, G; Cimaz, R; Giani, T; Gaggiano, C; Iannone, F; Cipriani, P; Mourabi, M; Spedicato, V; Barneschi, S; Aragona, E; Balistreri, A; Frediani, B; Fabiani, C; Cantarini, L
    Purpose of the present paper is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients with Behcet's disease (BD). The Registry is a clinical physician-driven non-population- and electronic-based instrument implemented for the retrospective and prospective collection of real-life data about demographics, clinical, therapeutic, laboratory, instrumental and socioeconomic information from BD patients; the Registry is based on the Research Electronic Data Capture (REDCap) tool, which is thought to collect standardised information for clinical real-life research, and has been realised to change over time according to future scientific acquisitions and potentially communicate with other existing and future Registries dedicated to BD. Starting from January 31st, 2021, to February 7th, 2022, 110 centres from 23 countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 5993 fields organised into 16 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. The development of the AIDA International Registry for BD patients will facilitate the collection of standardised data leading to real-world evidence, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately optimisation of scientific efforts and implementation of standardised care. Trial registration NCT05200715 in 21/01/2022.