Fibromyalgia in Rheumatoid Patients, Depression and Cognitive Dysfunction

Aim of the work: To correlate relation between depression, cognitive dysfunction and fibromyalgia (FM) in rheumatoid patients. Patients and methods: The study was done on 60 patients, in 2 groups, Group A: Active, and Group B inactive patients. 9 were FM and 51 patients without FM Depression was diagnosed based on PHQ 9 depression scale test Cognitive function was assessed by MOCA test. Results: Mean scale of depression in FM 16.78 ± 6.38 while in patients free of FM are 12.27 ± 5.39 with statistically significant p value. Mean scale of cognitive dysfunction in patient with FM was 23.33 ± 3.87 while in patients without are 22.9 ± 4.51 without statistically significant p value. Conclusions: There is statistically significant correlation between depression and fibromyalgia and no statistically significant correlation between cognitive function and fibromyalgia

Development and Implementation of the AIDA International Registry for Patients with Non-Infectious Scleritis

Introduction This article points out the design, methods, development and deployment of the international registry promoted by the AutoInflammatory Disease Alliance (AIDA) Network with the aim to define and assess paediatric and adult patients with immune-mediated scleritis. Methods This registry collects both retrospective and prospective real-world data from patients with non-infectious scleritis through the Research Electronic Data Capture (REDCap) tool and aims to promote knowledge and real-life evidence from patients enrolled worldwide; the registry also allows the collection of standardised data, ensuring the highest levels of security and anonymity of patients' data and flexibility to change according to scientific acquisitions over time. The communication with other similar registries has been also ensured in order to pursue the sustainability of the project with respect to the adaptation of collected data to the most diverse research projects. Results Since the launch of the registry, 99 centres have been involved from 20 countries and four continents. Forty-eight of the centres have already obtained a formal approval from their local ethics committees. At present, the platform counts 259 users (95 principal investigators, 160 site investigators, 2 lead investigators, and 2 data managers); the platform collects baseline and follow-up data using 3683 fields organised into 13 instruments, including patient's demographics, history, symptoms, trigger or risk factors, therapies and healthcare utilization. Conclusions The development of the AIDA International Registry for patients with non-infectious scleritis will allow solid research on this rare condition. Real-world evidence resulting from standardised real-life data will lead to the optimisation of routine clinical and therapeutic management, which are currently limited by the rarity of this ocular inflammatory condition

Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

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

Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

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 22nd, 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

Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

83siObjective: 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 22nd, 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. This Project can be found on https://clinicaltrials.gov NCT05200715.noneVitale A, Caggiano V, Della Casa F, Hernández-Rodríguez 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, Akkoç N, Li Gobbi F, Gidaro A, Olivieri AN, Al-Mayouf SM, Erten S, Gentileschi S, Vasi I, Tarsia M, Mahmoud AAA, Frediani B, Fares Alzahrani M, Laymouna AH, Ricci F, Cardinale F, Jahnz-Rózyk 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 LVitale, A; Caggiano, V; Della Casa, F; Hernández-Rodríguez, 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; Akkoç, N; Li Gobbi, F; Gidaro, A; Olivieri, An; Al-Mayouf, Sm; Erten, S; Gentileschi, S; Vasi, I; Tarsia, M; Mahmoud, Aaa; Frediani, B; Fares Alzahrani, M; Laymouna, Ah; Ricci, F; Cardinale, F; Jahnz-Rózyk, 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,