Evidence map›Paper›PMID 35755024›Full record

ArticleFrontiers in medicine2022

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

Francesca Della Casa, Antonio Vitale, Giuseppe Lopalco, Piero Ruscitti, Francesco Ciccia, Giacomo Emmi, Marco Cattalini, Ewa Wiesik-Szewczyk, Maria Cristina Maggio, Benson Ogunjimi and 44 more

Registry-linked trialOpen access · goldAbstract 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 8 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 2 pooled it
0.9field-weighted citation impact, top 29% of its field
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

8 citing papers in PubMed, 2 syntheses or guidelines pooled it, 12 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Review
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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

54 authors at 20 institutions in 9 countries.

Francesca Della CasaDepartment of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy.
Antonio VitaleDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Giuseppe LopalcoRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Piero RuscittiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Francesco CicciaDepartment of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy.
Giacomo EmmiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Marco CattaliniPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Ewa Wiesik-SzewczykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Maria Cristina MaggioUniversity Department PROMISE "G. D'Alessandro", University of Palermo, Palermo, Italy.
Benson OgunjimiDepartment of Pediatrics, Antwerp University Hospital, Edegem, Belgium.
Petros P SfikakisJoint Academic Rheumatology Program, National and Kapodistrian University of Athens Medical School, Athens, Greece.
Abdurrahman TufanDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Sulaiman M Al-MayoufKing Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Emanuela Del GiudiceDepartment of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Italy.
Emma AragonaDivision of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
Francesco La TorreDepartment of Pediatrics, Pediatric Rheumatology Center, Ospedale "Giovanni XXIII", AOU Consorziale Policlinico, Bari, Italy.
Jurgen SotaDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Sergio ColellaRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Ilenia Di ColaRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Daniela IaconoDepartment of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy.
Irene MattioliDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Karina Jahnz-RózykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Rik JoosDepartment of Pediatrics, Antwerp University Hospital, Edegem, Belgium.
Katerina LaskariJoint Academic Rheumatology Program, National and Kapodistrian University of Athens Medical School, Athens, Greece.
Carla GaggianoDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Anna AbbruzzeseRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Paola CiprianiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Gelsomina RozzaDepartment of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy.
Alhanouf AlSaleemDepartment of Pediatrics King Faisal Specialist Hospital and Research Center Riyadh, Riyadh, Saudi Arabia.
Derya YildirimDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Maria TarsiaDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Gaafar RagabInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Francesca RicciPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Fabio CardinaleDepartment of Pediatrics, Pediatric Rheumatology Center, Ospedale "Giovanni XXIII", AOU Consorziale Policlinico, Bari, Italy.
Marcelina KorzeniowskaDepartment 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 and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Valeria CaggianoDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Moustafa Ali SaadInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Rosa Maria PereiraRheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil.
Virginia BerlengieroDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Stefano GentileschiUnit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
Silvana GuerrieroDepartment of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
Teresa GianiDepartment of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy.
Viviana GelardiDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
Florenzo IannoneRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Henrique Ayres Mayrink GiardiniRheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil.
Ibrahim A AlmaghlouthRheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Riza Can KardasDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Djouher Ait-IdirResearch Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Department of Biology, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria.
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.
Claudia FabianiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Donato RiganteDepartment of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Luca CantariniDepartment of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy.
University of Siena · ITUniversity of Bari Aldo Moro · ITCentral Clinical Hospital · PLGazi University · TRUniversity of Campania "Luigi Vanvitelli" · ITUniversity of L'Aquila · ITAzienda Ospedaliera Universitaria Senese · ITCairo University · EGHospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo · BRKing Faisal Specialist Hospital & Research Centre · SANational and Kapodistrian University of Athens · GROspedale Pediatrico Giovanni XXIII · ITUniversity of Brescia · ITUniversity of Florence · ITAgostino Gemelli University Polyclinic · ITAzienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia · ITKing Saud University · SAOspedale Vincenzo Cervello · ITSapienza University of Rome · ITUniversitair Ziekenhuis Brussel · BE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: This 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). Methods: This 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. Results: The 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. Conclusions: The 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. NCT05200715 available at https://clinicaltrials.gov/.

Indexed as

autoinflammatory diseasesInternational Registrypersonalized medicineprecision medicinerare diseases

Identifiers

PMID35755024
PMCPMC9226373
OpenAlexW4281610004

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.