Evidence map›Paper›PMID 35463015›Full record

ArticleFrontiers in medicine2022

Development and Implementation of the AIDA International Registry for Patients With Still's Disease.

Antonio Vitale, Francesca Della Casa, Giuseppe Lopalco, Rosa Maria Pereira, Piero Ruscitti, Roberto Giacomelli, Gaafar Ragab, Francesco La Torre, Elena Bartoloni, Emanuela Del Giudice and 50 more

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Frontiers in medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05200715 (Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis), which is not on this map. Cited by 19 papers.

0numbers the graph read from it
0cells of the map it votes in
19citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT05200715 recruitingnot on this map

Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis

Typeobservational_patient_registrySponsorUniversity of SienaRan2020 to 2030Enrolled3,500ConditionsHereditary Autoinflammatory Diseases, Schnitzler Syndrome, Behcet Syndrome, PFAPA SyndromeArmsNo intervention is foreseen by the protocol.
3 · Its place in the literature

Who cites it

19 citing papers in PubMed.

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  12. Observational
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

60 authors.

Antonio VitaleDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Francesca Della CasaDepartment of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy.
Giuseppe LopalcoRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Rosa Maria PereiraRheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil.
Piero RuscittiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Roberto GiacomelliRheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.
Gaafar RagabInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Francesco La TorreDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Elena BartoloniRheumatology Unit, Department of Medicine and Surgery, University of Perugia, Perugia, Italy.
Emanuela Del GiudiceDepartment of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy.
Claudia LomaterAzienda Ospedaliera (AO) Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.
Giacomo EmmiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Marcello GovoniRheumatology Unit, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, Department of Medical Sciences, University of Ferrara, Ferrara, Italy.
Maria Cristina MaggioUniversity Department PROMISE "G. D'Alessandro", University of Palermo, Palermo, Italy.
Armin MaierRheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.
Joanna MakowskaDepartment of Rheumatology, Medical University of Lodz, Łódź, Poland.
Benson OgunjimiAntwerp Unit for Data Analysis and Computation in Immunology and Sequencing, University of Antwerp, Antwerp, Belgium.
Petros P SfikakisJoint Academic Rheumatology Program, First Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
Paolo SfrisoRheumatology Unit, Department of Medicine, University of Padua, Padua, Italy.
Carla GaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Florenzo IannoneRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Marília A DagostinRheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil.
Ilenia Di ColaRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Luca NavariniRheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.
Ayman Abdelmonem Ahmed MahmoudInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Fabio CardinaleDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Ilenia RiccucciRheumatology Unit, Department of Medicine and Surgery, University of Perugia, Perugia, Italy.
Maria Pia ParoliUveitis Unit, Department of Sense Organs, Eye Clinic, Sapienza University of Rome, Rome, Italy.
Elena Maria MaruccoAzienda Ospedaliera (AO) Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.
Irene MattioliDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Jurgen SotaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Anna AbbruzzeseRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Isabele P B AntonelliRheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil.
Paola CiprianiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Abdurrahman TufanDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Claudia FabianiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Mustafa Mahmoud RamadanInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Marco CattaliniPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Riza Can KardasDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Gian Domenico SebastianiU.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.
Henrique A Mayrink GiardiniRheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil.
José Hernández-RodríguezVasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, Institut d'Investigacions Biomédiques August Pi i Sunyer (IDIBAPS), University of Barcelona, Barcelona, Spain.
Violetta MastrorilliDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Ewa Więsik-SzewczykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Micol FrassiRheumatology and Clinical Immunology, Spedali Civili, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Valeria CaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Salvatore TelescaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Heitor F GiordanoRheumatology Division, Faculdade de Medicina, Hospital das Clínicas, Universidade de São Paulo, São Paulo, Brazil.
Emmanuele GuadalupiDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Teresa GianiAzienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Traumatologico Ortopedico (CTO), Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.
Alessandra RenieriMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Sergio ColellaRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Giulia CataldiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Martina GentileRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Alessandra FabbianiMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Ibrahim A Al-MaghlouthDepartment of Family and Community Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Bruno FredianiUnit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
Alberto BalistreriBioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Donato RiganteDepartment of Life Sciences and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Luca CantariniDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder. Methods: This Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management. The collection of standardized data is thought to bring knowledge about real-life clinical research and potentially communicate with other existing and future Registries dedicated to Still's disease. Moreover, it has been conceived to be flexible enough to easily change according to future scientific acquisitions. Results: Starting from June 30th to February 7th, 2022, 110 Centers 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 4449 fields organized into 14 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. Conclusions: This international Registry for patients with Still's disease will allow a robust clinical research through collection of standardized data, international consultation, dissemination of knowledge, and implementation of observational studies based on wide cohorts of patients followed-up for very long periods. Solid evidence drawn from "real-life" data represents the ultimate goal of this Registry, which has been implemented to significantly improve the overall management of patients with Still's disease. NCT05200715 available at https://clinicaltrials.gov/.

Indexed as

autoinflammatory diseasespersonalized medicineprecision medicinerare diseasesresearchtreatment

Identifiers

PMID35463015
PMCPMC9021753

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Registered trials

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