ArticleFrontiers in medicine2022
The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases.
Registry-linked trialAbstract read
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 11 papers, 2 of them syntheses that pooled it.
0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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.
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.
Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis
Who cites it
11 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pseudonymization tools for medical research: a systematic review.BMC medical informatics and decision making · 2025Pooled it
- Off-label use of canakinumab in pediatric rheumatology and rare diseases.Frontiers in medicine · 2022Pooled it
- Irreversible Ocular and Systemic Damage in ROSAH Syndrome.Ophthalmology and therapy · 2026Article
- Development and implementation of the international AIDA network spondylarthritis registry.Frontiers in medicine · 2025Article
- Development and implementation of the International AIDA Network Castleman's disease registry.Frontiers in medicine · 2025Article
- Knowledge and Current Practices in Monogenic Uveitis: An International Survey by IUSG and AIDA Network.Ophthalmology and therapy · 2024Article
- Risk for cancer development in familial Mediterranean fever and associated predisposing factors: an ambidirectional cohort study from the international AIDA Network registries.Frontiers in immunology · 2024Article
- VEXAS syndrome: Current clinical, diagnostic and treatment approaches.Intractable & rare diseases research · 2023Review
- The GAIN Registry - a New Prospective Study for Patients with Multi-organ Autoimmunity and Autoinflammation.Journal of clinical immunology · 2023Article
- Increase in pediatric recurrent fever evaluations during the first year of the COVID-19 pandemic in North America.Frontiers in pediatrics · 2023Article
- Editorial: Global excellence in rheumatology: Europe.Frontiers in medicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
88 authors.
Carla GaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Antonio VitaleDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Abdurrahman TufanDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Gaafar RagabInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Emma AragonaDivision of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, 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.
Djouher Ait-IdirResearch Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Department of Biology, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria.
Giovanni ContiPediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy.
Ludovica IezziDepartment of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Maria Cristina MaggioUniversity Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (PROMISE) "G. D'Alessandro", University of Palermo, Palermo, Italy.
Marco CattaliniPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Francesco La TorreDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Giuseppe LopalcoRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Elena VerrecchiaRare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy.
Amato de PaulisDepartment of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy.
Ali SahinDivision of Rheumatology, Department of Internal Medicine, Medical Faculty, Sivas Cumhuriyet University, Sivas, Turkey.
Antonella InsalacoDivision of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Rome, Italy.
Petros P SfikakisJoint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece.
Achille MarinoUnit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy.
Micol FrassiRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Benson OgunjimiDepartement of Pediatrics, Antwerp University Hospital, Edegem, Belgium.
Daniela Opris-BelinskiRheumatology and Internal Medicine Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
Paola ParronchiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Giacomo EmmiDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
Farhad ShahramBehcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
Francesco CicciaDepartment of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.
Matteo PigaRheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.
José Hernández-RodríguezVasculitis Research Unit, Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, August Pi I Sunyer Biomedical Research Institute (IDIBAPS), University of Barcelona, Barcelona, Spain.
Rosa Maria R PereiraRheumatology Division, Faculdade de Medicina, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo (HCFMUSP), Universidade de São Paulo, São Paulo, Brazil.
Maria AlessioPediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
Roberta NaddeiPediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.
Alma Nunzia OlivieriDepartment of Woman, Child and of General and Specialized Surgery, University of Campania "Luigi Vanvitelli", Naples, Italy.
Emanuela Del GiudiceDepartment of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy.
Paolo SfrisoRheumatology Unit, Department of Medicine (DIMED), University of Padova, Padova, Italy.
Piero RuscittiRheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
Francesca Li GobbiRheumatology Unit, San Giovanni di Dio Hospital, Firenze, Italy.
Hamit KucukDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Jurgen SotaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Mohamed A HusseinInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Giuseppe MaliziaDivision of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
Karina Jahnz-RóżykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Rawda Sari-HamidouResearch Laboratory Toxicomed, Faculty of Medicine, Abou Bekr Belkaid University, Tlemcen, Algeria.
Mery RomeoPediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy.
Francesca RicciPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Fabio CardinaleDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Florenzo IannoneRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Francesca Della CasaDepartment of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy.
Marco Francesco NataleDivision of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Rome, Italy.
Katerina LaskariJoint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece.
Teresa GianiUnit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy.
Franco FranceschiniRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Vito SabatoDepartment of Immunology, Allergology, Rheumatology, Antwerp University Hospital, University of Antwerp, Antwerp, Belgium.
Derya YildirimDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Valeria CaggianoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Mohamed Tharwat HegazyInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Rosalba Di MarzoDivision of Ematology II, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
Aleksandra KucharczykDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.
Ghalia KhellafFaculté de Médecine, Service de Néphrologie, Centre Hospitalo-Universitaire Lamine Debaghine, Université Alger 1 Benyoucef Benkhedda, Alger, Algeria.
Maria TarsiaDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Ibrahim A AlmaghlouthRheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Ahmed Hatem LaymounaInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Violetta MastrorilliDepartment of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy.
Laura DottaPediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.
Luca BenacquistaDepartment of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Salvatore GrossoClinical Paediatrics, Department of Molecular Medicine and Development, University of Siena, Siena, Italy.
Francesca CrisafulliRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Veronica ParrettiDepartment 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 da Faculdade de Medicina da Universidade de São Paulo (HCFMUSP), Universidade de São Paulo, São Paulo, Brazil.
Ayman Abdel-Monem Ahmed MahmoudInternal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt.
Rossana NuzzoleseDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Marta De MussoDepartment of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, Siena, Italy.
Cecilia Beatrice ChighizolaDepartment of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.
Stefano GentileschiUnit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
Mirella MorroneRheumatology 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.
Veronica SpedicatoRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
Henrique A Mayrink GiardiniRheumatology Division, Faculdade de Medicina, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo (HCFMUSP), Universidade de São Paulo, São Paulo, Brazil.
Ibrahim VasiDivision of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey.
Alessandra RenieriMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Alessandra FabbianiMedical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy.
Maria Antonietta MencarelliGenetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.
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.
Gian Marco TosiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Claudia FabianiOphthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.
Merav LidarFamilial Mediterranean Fever (FMF) Clinic, The Chaim Sheba Medical Center, Ramat-Gan, Israel.
Donato RiganteDepartment of Life Sciences and Global 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.
Abstract
Objective: The present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network. Methods: This is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner stones of the platform. Results: AIDA project will share knowledge and expertise on mAIDs. Since its start, 118 centers from 24 countries and 4 continents have joined the AIDA project. Fifty-nine centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 337 users (122 Principal Investigators, 210 Site Investigators, 2 Lead Investigators, and 3 data managers). The Registry collects baseline and follow-up data using 3,748 fields organized into 21 instruments, which include demographics, patient history, symptoms, trigger/risk factors, therapies, and healthcare information for mAIDs patients. Conclusions: The AIDA mAIDs Registry, acts both as a research tool for future collaborative real-life studies on mAIDs and as a service to connect all the figures called to participate. On this basis, the registry is expected to play a pivotal role in generating new scientific evidence on this group of rare diseases, substantially improving the management of patients, and optimizing the impact on the healthcare system. NCT05200715 available at https://clinicaltrials.gov.
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autoinflammatory diseasesinternational registrypersonalized medicineprecision medicinerare diseases
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NCT05200715ClinicalTrials.gov
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