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

Casa, Francesca Della; Vitale, A.; Guerriero, Silvana; Sota, Jurgen; Cimaz, Rolando; Ragab, Gaafar; Ruscitti, Piero; Pereira, Rosa Maria Rodrigues; Minoia, Francesca; Giudice, Emanuela Del; Emmi, Giacomo; Lomater, Claudia; Monti, Sara; Canofari, Claudia; Gaggiano, Carla; Alessio, Giovanni; Miserocchi, Elisabetta; Conforti, Alessandro; Dagostin, Marília A.; Mapelli, Chiara; Paroli, Maria Pia; Parretti, Veronica; Albano, Valeria; Favale, Rosa Anna; Marelli, Luca; Hegazy, Mohamed Tharwat; Cipriani, Paola; Antonelli, Isabele P. B.; Caggiano, Valeria; Aragona, Emma; Laymouna, Ahmed Hatem; Tosi, Gian Marco; Tarsia, Maria; Cattalini, Marco; Torre, Francesco La; Lopalco, Giuseppe; Więsik-Szewczyk, Ewa; Frassi, Micol; Gentileschi, Stefano; Giordano, Heitor F.; Frediani, Bruno; Shinjo, Samuel Katsuyuki; Rigante, Donato; Sfikakis, Petros P.; Balistreri, Alberto; Hussein, Mohamed; Amin, Rana Hussein; Cantarini, Luca; Fabiani, Claudia

doi:10.1007/s40123-022-00459-1

Cited by 17 publications

(7 citation statements)

References 14 publications

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“…Regarding autoinflammatory diseases, the AutoInflammatory Disease Alliance (AIDA) has already developed and launched eight international registries for patients with many rare autoinflammatory diseases (6)(7)(8). The AIDA Project has already allowed the construction of an international Network of physicians and researchers interested in putting together information to expand current evidence about monogenic autoinflammatory diseases, Still's disease, Schnitzler's syndrome, Behçet's disease, periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis (PFAPA) syndrome, non-infectious uveitis, non-infectious scleritis, and undifferentiated systemic autoinflammatory diseases (USAIDs).…”

Section: Discussionmentioning

confidence: 99%

“…As for other AIDA registries (6)(7)(8), the assessment of the socioeconomic influence of the disease on the national healthcare systems, on patients' social role and job impact represent an intriguing subject of analysis. Other objectives will be identified based on the challenges that clinical practice and scientific research will bring forward in the coming years.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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ObjectiveThe 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.MethodsThis 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.ResultsTo 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.ConclusionThis 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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

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“…The Registry for Schnitzler's syndrome is classified as a clinical-, physician-driven, population-and electronic-based registry; it was developed along with other autoinflammatory disease-specific registries in the context of AIDA network (7)(8)(9).…”

Section: Methodsmentioning

confidence: 99%

Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome

et al. 2022

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ObjectiveThe present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.MethodsThis is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other existing or future similar registries.ResultsSince its launch, 113 centers from 23 countries in 4 continents have been involved. Fifty-seven have already obtained the approval from their local Ethics Committees. The platform counts 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) at current (April 28th, 2022). The registry collects baseline and follow-up data using 3,924 fields organized into 25 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, laboratory, instrumental exams, therapies, socioeconomic information, and healthcare access.ConclusionsThis International Registry for patients with Schnitzler's syndrome facilitates standardized data collection, enabling international collaborative projects through data sharing and dissemination of knowledge; in turn, it will shed light into many blind spots characterizing this complex autoinflammatory disorder.

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“…To date, nine international registries have been launched, including Behçet's disease (BD), monogenic autoinflammatory diseases, Still's disease, Schnitzler's syndrome, Periodic Fever, Aphthous stomatitis, Pharyngitis and cervical Adenitis (or PFAPA) syndrome, non-infectious uveitis, non-infectious scleritis, vacuoles, E1 enzyme/Xlinked autoinflammatory somatic (or VEXAS) syndrome and undifferentiated autoinflammatory diseases. The use of these registries will allow sharing of knowledge, experience, and different perceptions on the clinical, therapeutic and research approaches in the field of rare diseases (3,4).…”

Section: Undifferentiatedmentioning

confidence: 99%

Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

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ObjectiveThis paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs).MethodsThis is an electronic registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions and potentially communicate with other similar tools; this platform ensures security, data quality and data governance.ResultsThe focus of the AIDA project is connecting physicians and researchers from all over the world to shed a new light on heterogeneous rare diseases. Since its birth, 110 centers from 23 countries and 4 continents have joined the AIDA project. Fifty-four centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 179 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3,769 fields organized into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare information access for USAIDs patients.ConclusionsThe development of the AIDA International Registry for USAIDs patients will facilitate the online collection of real standardized data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the patient cohort of USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases. NCT 05200715 available at https://clinicaltrials.gov/.

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

Cited by 17 publications

References 14 publications

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

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

Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome

Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

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