Study Results
Results pending
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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Recruitment Status
RECRUITING
Total Enrollment
3500 participants
Study Classification
OBSERVATIONAL
Study Start Date
2020-08-06
Study Completion Date
2030-08-06
Brief Summary
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Autoinflammatory diseases (AID) are clinical entities characterized by recurrent inflammatory attacks in absence of infection, neoplasm or deregulation of the adaptive immune system. Among them, hereditary periodic syndromes, also known as monogenic AID, represent the prototype of this disease group, caused by mutations in genes involved in the regulation of innate immunity, inflammation and cell death. Based on recent experimental acquisitions in the field of monogenic AID, several immunologic disorders have been reclassified as polygenic/multifactorial AID, sharing pathogenetic and clinical features with hereditary periodic fevers. This has paved the way to new treatment targets for patients suffering from rare diseases of unknown origin, including Behçet's disease, Still disease, Schnitzler's disease, PFAPA (periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis) syndrome, chronic recurrent multifocal osteomyelitis (CRMO), non-infectious uveitis and scleritis. Gathering information on such rare conditions is made difficult by the small number of patients, along with the difficulty of obtaining an accurate diagnosis in non-specialized clinical settings.
In this context, the AIDA project promotes international collaboration among clinical centres to develop a permanent registry aimed at collecting demographic, genetic, clinical and therapeutic data of patients affected by monogenic and polygenic AID, in order to expand the current knowledge of these rare conditions.
In this context, the AIDA project promotes international collaboration among clinical centres to develop a permanent registry aimed at collecting demographic, genetic, clinical and therapeutic data of patients affected by monogenic and polygenic AID, in order to expand the current knowledge of these rare conditions.
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Detailed Description
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The AIDA registry service is based on REDCap (Research Electronic Data Capture, project-redcap.org), a secure web application for building and managing online surveys and databases, designed to support data capture for research studies. The platform is directly accessible through the AIDA website, after inserting a personal username and password. Currently, 11 registries are available, each one dedicated to the collection of data about:
* monogenic AID
* PFAPA syndrome
* undifferentiated systemic AID (USAID)
* Behçet's disease
* Schnitzler's disease
* VEXAS (vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic) syndrome
* Still disease
* noninfectious uveitis
* noninfectious scleritis
* spondyloarthritis
* Castleman disease
The registry will pursue the following aims within the first 36 months from the start of the enrollment:
1. to identify any association between clinical manifestations and gender, disease duration, body mass index and tabagism;
2. to detect differences in the clinical phenotype between pediatric-onset and adult-onset patients;
3. to identify the impact of different treatment approaches on clinical and laboratory disease manifestations.
Additional aims of the AIDA project, to be reached over the next 10 years, are the following:
1. to overcome fragmentation in the clinical experience on these rare conditions by sharing the knowledge at the international level;
2. to improve knowledge about the clinical presentation, genotype-phenotype correlations, response to treatment, long-term complications and social impact when monogenic and polygenic AID manifest during either childhood or adulthood;
3. to identify the long-term clinical course of patients diagnosed with monogenic or polygenic AID;
4. to promote awareness among physicians and enhance early recognition of these diseases;
5. to describe the impact of AID on quality of life;
6. to identify any impact of monogenic and polygenic AID on fertility;
7. to study the course of AID during pregnancy;
8. to assess the socioeconomic impact of AID;
9. to promote future multicentric studies.
Data collection is both retrospective and prospective. It includes demographic, clinical, diagnostic, genetic, clinimetric, laboratory, radiologic, therapeutic and socio-economic data. Instruments are designed to be filled out during routine clinical visits, usually scheduled every 3-6 months. Separation of personally identifiable information and medical data by using only pseudonyms for storing medical data ensures compliance with data protection regulations. The description of symptoms, diseases, procedures and injuries is based on the International Statistical Classification of Diseases and Related Health Problems (ICD)-10 coding system. Data management is both central and decentral. Data are extracted and statistically analyzed on a regular basis according to individual study protocols. A policy for authorship and dissemination of research findings is in place among the AIDA partners contributing to the registry.
The AIDA registry will support data collection for the conduction of clinical trials, observational studies, comparative effectiveness research, and other research on patients with monogenic and polygenic AID.
Several healthcare providers contributing to the AIDA Network are members of the European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA).
* monogenic AID
* PFAPA syndrome
* undifferentiated systemic AID (USAID)
* Behçet's disease
* Schnitzler's disease
* VEXAS (vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic) syndrome
* Still disease
* noninfectious uveitis
* noninfectious scleritis
* spondyloarthritis
* Castleman disease
The registry will pursue the following aims within the first 36 months from the start of the enrollment:
1. to identify any association between clinical manifestations and gender, disease duration, body mass index and tabagism;
2. to detect differences in the clinical phenotype between pediatric-onset and adult-onset patients;
3. to identify the impact of different treatment approaches on clinical and laboratory disease manifestations.
Additional aims of the AIDA project, to be reached over the next 10 years, are the following:
1. to overcome fragmentation in the clinical experience on these rare conditions by sharing the knowledge at the international level;
2. to improve knowledge about the clinical presentation, genotype-phenotype correlations, response to treatment, long-term complications and social impact when monogenic and polygenic AID manifest during either childhood or adulthood;
3. to identify the long-term clinical course of patients diagnosed with monogenic or polygenic AID;
4. to promote awareness among physicians and enhance early recognition of these diseases;
5. to describe the impact of AID on quality of life;
6. to identify any impact of monogenic and polygenic AID on fertility;
7. to study the course of AID during pregnancy;
8. to assess the socioeconomic impact of AID;
9. to promote future multicentric studies.
Data collection is both retrospective and prospective. It includes demographic, clinical, diagnostic, genetic, clinimetric, laboratory, radiologic, therapeutic and socio-economic data. Instruments are designed to be filled out during routine clinical visits, usually scheduled every 3-6 months. Separation of personally identifiable information and medical data by using only pseudonyms for storing medical data ensures compliance with data protection regulations. The description of symptoms, diseases, procedures and injuries is based on the International Statistical Classification of Diseases and Related Health Problems (ICD)-10 coding system. Data management is both central and decentral. Data are extracted and statistically analyzed on a regular basis according to individual study protocols. A policy for authorship and dissemination of research findings is in place among the AIDA partners contributing to the registry.
The AIDA registry will support data collection for the conduction of clinical trials, observational studies, comparative effectiveness research, and other research on patients with monogenic and polygenic AID.
Several healthcare providers contributing to the AIDA Network are members of the European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA).
Conditions
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Hereditary Autoinflammatory Diseases
Schnitzler Syndrome
Behcet Syndrome
PFAPA Syndrome
Still Disease
Autoinflammatory Syndrome, Unspecified
Uveitis
Scleritis
Vexas Syndrome
Spondyloarthritis (SpA)
Castleman Disease
Study Design
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Observational Model Type
COHORT
Study Time Perspective
OTHER
Study Groups
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Patients affected by autoinflammatory diseases
No intervention is foreseen by the protocol.
Intervention Type
OTHER
Patients will be observed for 10 years at least. Demographic, genetic, clinical, clinimetric, laboratory, radiologic and therapeutic data will be collected both retrospectively and prospectively during routine follow-up visits.
Interventions
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No intervention is foreseen by the protocol.
Patients will be observed for 10 years at least. Demographic, genetic, clinical, clinimetric, laboratory, radiologic and therapeutic data will be collected both retrospectively and prospectively during routine follow-up visits.
Intervention Type
OTHER
Eligibility Criteria
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Inclusion Criteria
* to be diagnosed with a monogenic AID according to the clinical phenotype and the detection of a confirmative genotype;
* to be diagnosed with clinical familial Mediterranean fever or Behçet's disease or Still disease or PFAPA syndrome or Schnitzler's disease or CRMO according to the corresponding clinical diagnostic and/or classification criteria;
* to be diagnosed with undifferentiated systemic AID;
* to be diagnosed with non-infectious uveitis according to the standardization for uveitis nomenclature (SUN) criteria;
* to be diagnosed with anterior or posterior non-infectious scleritis;
* to be diagnosed with spondyloarthritis according to ASAS and/or New York criteria;
* to be diagnosed with Castleman disease;
* to be diagnosed with clinical familial Mediterranean fever or Behçet's disease or Still disease or PFAPA syndrome or Schnitzler's disease or CRMO according to the corresponding clinical diagnostic and/or classification criteria;
* to be diagnosed with undifferentiated systemic AID;
* to be diagnosed with non-infectious uveitis according to the standardization for uveitis nomenclature (SUN) criteria;
* to be diagnosed with anterior or posterior non-infectious scleritis;
* to be diagnosed with spondyloarthritis according to ASAS and/or New York criteria;
* to be diagnosed with Castleman disease;
Exclusion Criteria
\- informed consent/assent not provided by the patient and/or his/her legal representative.
Eligible Sex
ALL
Accepts Healthy Volunteers
No
Sponsors
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University of Siena
OTHER
Sponsor Role
lead
Responsible Party
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Luca Cantarini
MD, PhD, Professor of Rheumatology
Responsibility Role
PRINCIPAL_INVESTIGATOR
Locations
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University Algiers 1
Algiers, , Algeria
Site Status
RECRUITING
Université M'Hamed Bougara de Boumerdas
Boumerdas, , Algeria
Site Status
RECRUITING
Flinders University
Adelaide, , Australia
Site Status
RECRUITING
University of Adelaide
Adelaide, , Australia
Site Status
RECRUITING
Antwerp University Hospital
Antwerp, , Belgium
Site Status
RECRUITING
Hospital das Clinicas da Faculdade de Medicina HCFMUSP
São Paulo, , Brazil
Site Status
RECRUITING
Peking University People's Hospital
Beijing, , China
Site Status
RECRUITING
The First Affiliated Hospital of Chongqing Medical University
Chongqing, , China
Site Status
RECRUITING
Universidad del Rosario - Escuela de Medicina Y Ciencias de La Salud
Bogotá, , Colombia
Site Status
RECRUITING
Mansoura University, Faculty of Medicine
Al Mansurah, , Egypt
Site Status
RECRUITING
Al-Azhar University
Cairo, , Egypt
Site Status
RECRUITING
Cairo University
Cairo, , Egypt
Site Status
RECRUITING
Universitätsklinikum Schleswig-Holstein
Lübeck, , Germany
Site Status
RECRUITING
Evangelismos General Hospital
Athens, , Greece
Site Status
RECRUITING
National and Kapodistrian University of Athens
Athens, , Greece
Site Status
RECRUITING
National and Kapodistrian University of Athens
Athens, , Greece
Site Status
RECRUITING
Prabha Eye Clinic & Research Centre
Bangalore, , India
Site Status
RECRUITING
Postgraduate Institute of Medical Education and Research
Chandigarh, , India
Site Status
RECRUITING
Shariati Hospital - Tehran University of Medical Sciences
Tehran, , Iran
Site Status
RECRUITING
Azienda Ospedaliero-Universitaria Senese
Siena, Tuscany, Italy
Site Status
RECRUITING
AOUC Policlinico di Bari
Bari, , Italy
Site Status
RECRUITING
University of Bari Medical School
Bari, , Italy
Site Status
RECRUITING
University-Hospital of Bari - UOC Medicina Interna
Bari, , Italy
Site Status
RECRUITING
University-Hospital of Bari - UOC Pediatria
Bari, , Italy
Site Status
RECRUITING
University-Hospital of Bari - UOC Reumatologia
Bari, , Italy
Site Status
RECRUITING
Central Hospital of Bolzano
Bolzano, , Italy
Site Status
RECRUITING
ASST degli Spedali Civili - P.O. Ospedale dei Bambini
Brescia, , Italy
Site Status
RECRUITING
ASST degli Spedali Civili
Brescia, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Universitaria di Cagliari
Cagliari, , Italy
Site Status
RECRUITING
AOU Policlinico Vittorio Emanuele - Dip. Materno-Infantile
Catania, , Italy
Site Status
RECRUITING
ARNAS Garibaldi - Catania
Catania, , Italy
Site Status
RECRUITING
Azienda Ospedaliera di Catanzaro Pugliese Ciaccio
Catanzaro, , Italy
Site Status
RECRUITING
Ospedale SS Annunziata
Chieti, , Italy
Site Status
RECRUITING
Ospedale San Paolo
Civitavecchia, , Italy
Site Status
RECRUITING
Arcispedale Sant'Anna
Ferrara, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Universitaria Careggi - SOD Medicina Interna Interdisciplinare
Florence, , Italy
Site Status
RECRUITING
Azienda Ospedaliero-Universitaria Careggi - SOD Immunologia e Terapie Cellulari
Florence, , Italy
Site Status
RECRUITING
Azienda Ospedaliero-Universitaria Meyer
Florence, , Italy
Site Status
RECRUITING
Azienza Ospedaliero-Universitaria Careggi - SOD Reumatologia
Florence, , Italy
Site Status
RECRUITING
Ospedale San Giovanni di Dio
Florence, , Italy
Site Status
RECRUITING
Sapienza University - Polo Pontino
Latina, , Italy
Site Status
RECRUITING
Ospedale Vito Fazzi
Lecce, , Italy
Site Status
RECRUITING
ASL1 Avezzano, Sulmona, L'Aquila
L’Aquila, , Italy
Site Status
RECRUITING
Università degli Studi di L'Aquila - UOC Medicina Interna e Nefrologia
L’Aquila, , Italy
Site Status
RECRUITING
AOU Policlinico G. Martino
Messina, , Italy
Site Status
RECRUITING
ASST Gaetano Pini/ CTO
Milan, , Italy
Site Status
RECRUITING
Policlinico di Milano
Milan, , Italy
Site Status
RECRUITING
ASST Fatebenefratelli Sacco - UO Medicina Generale
Milan, , Italy
Site Status
RECRUITING
ASST Fatebenefratelli Sacco - UOC Reumatologia
Milan, , Italy
Site Status
RECRUITING
ASST Gaetano Pini/CTO
Milan, , Italy
Site Status
RECRUITING
IRCCS Ospedale San Raffaele
Milan, , Italy
Site Status
RECRUITING
Ospedale Fatebenefratelli e Oftalmico
Milan, , Italy
Site Status
RECRUITING
Ospedale Fatebenefratelli e Oftalmico
Milan, , Italy
Site Status
RECRUITING
AORN Cardarelli
Napoli, , Italy
Site Status
RECRUITING
AOU Federico II
Napoli, , Italy
Site Status
RECRUITING
AOU Federico II
Napoli, , Italy
Site Status
RECRUITING
AOU Luigi Vanvitelli - UO Reumatologia
Napoli, , Italy
Site Status
RECRUITING
AOU Luigi Vanvitelli - UOC Pediatria 2
Napoli, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Universitaria di Padova
Padua, , Italy
Site Status
RECRUITING
ARNAS Civico Di Cristina Benfratelli
Palermo, , Italy
Site Status
RECRUITING
ARNAS Ospedale Civico di Cristina Benfratelli
Palermo, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Ospedali Riuniti Villa Sofia-Cervello
Palermo, , Italy
Site Status
RECRUITING
Università degli Studi di Palermo
Palermo, , Italy
Site Status
RECRUITING
Fondazione IRRCS San Matteo - SC Reumatologia
Pavia, , Italy
Site Status
RECRUITING
Azienda Ospedaliera di Perugia
Perugia, , Italy
Site Status
RECRUITING
Azienda Ospedaliero Universitaria Pisana
Pisa, , Italy
Site Status
RECRUITING
University of Pisa
Pisa, , Italy
Site Status
RECRUITING
AOU Policlinico Umberto I
Roma, , Italy
Site Status
RECRUITING
Azienda Ospedaliera San Camillo Forlanini
Roma, , Italy
Site Status
RECRUITING
IRCCS Fondazione PU Agostino Gemelli - UOC Medicina Interna Columbus
Roma, , Italy
Site Status
RECRUITING
IRCCS Fondazione PU Agostino Gemelli - UOC Pediatria
Roma, , Italy
Site Status
RECRUITING
Ospedale Pediatrico Bambino Gesù
Roma, , Italy
Site Status
RECRUITING
Ospedale Universitario Campus Bio-Medico
Roma, , Italy
Site Status
RECRUITING
Sapienza University - Polo Pontino
Roma, , Italy
Site Status
RECRUITING
Università di Roma Tor Vergata
Roma, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Universitaria di Salerno
Salerno, , Italy
Site Status
RECRUITING
ATS Sardegna
Tempio Pausania, , Italy
Site Status
RECRUITING
AO Ordine Mauriziano
Torino, , Italy
Site Status
RECRUITING
A.S.L. Vercelli - Ospedale S. Andrea
Vercelli, , Italy
Site Status
RECRUITING
Azienda Ospedaliera Universitaria Integrata
Verona, , Italy
Site Status
RECRUITING
Tripoli Children Hospital
Tripoli, , Libya
Site Status
RECRUITING
Tripoli Children Hospital
Tripoli, , Libya
Site Status
RECRUITING
University Hospital of Martinique
Fort-de-France, , Martinique
Site Status
RECRUITING
Asociacion para Evitar la Ceguera en México
Mexico City, , Mexico
Site Status
RECRUITING
Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán
Mexico City, , Mexico
Site Status
RECRUITING
Medical University of Lodz
Lodz, , Poland
Site Status
RECRUITING
Central Clinical Hospital of the Ministry of National Defense - Military Institute of Medicine
Warsaw, , Poland
Site Status
RECRUITING
Sf. Maria Hospital - University of Medicine and Pharmacy "Carol Davila"
Bucharest, , Romania
Site Status
RECRUITING
Jazan University
Jizan, , Saudi Arabia
Site Status
RECRUITING
King Faisal Specialist Hospital and Research Center
Riyadh, , Saudi Arabia
Site Status
RECRUITING
King Saud University
Riyadh, , Saudi Arabia
Site Status
RECRUITING
Hospital Universitario Cruces - Instituto de investigación sanitaria Biocruces
Barakaldo, , Spain
Site Status
RECRUITING
Hospital Universitario Cruces
Barakaldo, , Spain
Site Status
RECRUITING
Hospital Clinic of Barcelona
Barcelona, , Spain
Site Status
RECRUITING
Hospital Fundación Jiménez Díaz
Madrid, , Spain
Site Status
RECRUITING
Hospital Ramón y Cajal
Madrid, , Spain
Site Status
RECRUITING
Hospital Universitario Fundación Jiménez Díaz/Hospital Universitario Rey Juan Carlos
Madrid, , Spain
Site Status
RECRUITING
Hospital Universitario Marqués de Valdecilla
Santander, , Spain
Site Status
RECRUITING
Hospital Universitari Doctor Peset
Valencia, , Spain
Site Status
RECRUITING
Farhat Hached Hospital
Sousse, , Tunisia
Site Status
RECRUITING
Çukurova University
Adana, , Turkey (Türkiye)
Site Status
RECRUITING
Ankara Yıldırım Beyazıt University
Ankara, , Turkey (Türkiye)
Site Status
RECRUITING
Gazi University
Ankara, , Turkey (Türkiye)
Site Status
RECRUITING
Hacettepe University Faculty of Medicine
Ankara, , Turkey (Türkiye)
Site Status
RECRUITING
Başakşehir Çam and Sakura City Hospital
Istanbul, , Turkey (Türkiye)
Site Status
RECRUITING
Cerrahpasa Medical School Istanbul University
Istanbul, , Turkey (Türkiye)
Site Status
RECRUITING
Marmara University, Research And Education Hospital
Istanbul, , Turkey (Türkiye)
Site Status
RECRUITING
Dokuz Eylul University School of Medicine
Izmir, , Turkey (Türkiye)
Site Status
RECRUITING
Manisa Celal Bayar University
Manisa, , Turkey (Türkiye)
Site Status
RECRUITING
Sakarya University
Sakarya, , Turkey (Türkiye)
Site Status
RECRUITING
Sivas Cumhuriyet University
Sivas, , Turkey (Türkiye)
Site Status
RECRUITING
I. Horbachevsky Ternopil National Medical University - Ternopil Regional Children's Hospital
Ternopil, , Ukraine
Site Status
RECRUITING
Countries
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Algeria
Australia
Belgium
Brazil
China
Colombia
Egypt
Germany
Greece
India
Iran
Italy
Libya
Martinique
Mexico
Poland
Romania
Saudi Arabia
Spain
Tunisia
Turkey (Türkiye)
Ukraine
Central Contacts
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Facility Contacts
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Ghalia Khellaf
Role: primary
Djouher Ait-Idir
Role: primary
Syed Ali
Role: primary
Pravin Hissaria
Role: primary
Benson Ogunjimi
Role: primary
Henrique A Mayrink Giardini
Role: primary
Haihong Yao
Role: primary
Peizeng Yang
Role: primary
Alejandra De-la-Torre
Role: primary
Samar Tharwat
Role: primary
Abdelhfeez Moshrif
Role: primary
Gaafar Ragab
Role: primary
Andreas Recke
Role: primary
Anastasios Karamanakos
Role: primary
Petros P Sfikakis
Role: primary
Lampros Fotis
Role: primary
Kalpana Babu
Role: primary
Vishali Gupta
Role: primary
Farhad Shahram
Role: primary
Luca Cantarini, MD,PhD
Role: primary
Silvana Guerriero
Role: primary
Marcella Prete
Role: primary
Piero Portincasa
Role: primary
Francesco La Torre
Role: primary
Giuseppe Lopalco
Role: primary
Armin Maier
Role: primary
Marco Cattalini
Role: primary
Micol Frassi
Role: primary
Alberto Cauli
Role: primary
Patrizia Barone
Role: primary
Alberto Lo Gullo
Role: primary
Romina Gallizzi
Role: primary
Luciana Breda
Role: primary
Alessandro Conforti
Role: primary
Marcello Govoni
Role: primary
To be Assigned
Role: primary
Paola Parronchi
Role: primary
Gabriele Simonini
Role: primary
Serena Guiducci
Role: primary
Francesca Li Gobbi
Role: primary
Emanuela Del Giudice
Role: primary
Adele Civino
Role: primary
Piero Ruscitti
Role: primary
Francesco Carubbi
Role: primary
Giovanni Conti
Role: primary
Stefania Costi
Role: primary
Francesca Minoia
Role: primary
Antonio Gidaro
Role: primary
Piercarlo Sarzi Puttini
Role: primary
Cecilia Chighizola
Role: primary
Lorenzo Dagna
Role: primary
Antonio Luca Brucato
Role: primary
Angela Mauro
Role: primary
Maria Bova
Role: primary
Amato De Paulis
Role: primary
Mariolina Alessio
Role: primary
Francesco Ciccia
Role: primary
Alma Nunzia Olivieri
Role: primary
Paolo Sfriso
Role: primary
Annarita Giardina
Role: primary
Maria Cristina Maggio
Role: primary
Emma Aragona
Role: primary
Giuliana Guggino
Role: primary
Serena Bugatti
Role: primary
Elena Bartoloni Bocci
Role: primary
Rosaria Talarico
Role: primary
Valentina Pucino
Role: primary
Fabrizio Conti
Role: primary
Gian Domenico Sebastiani
Role: primary
Elena Verrecchia
Role: primary
Donato Rigante
Role: primary
Antonella Insalaco
Role: primary
Roberto Giacomelli
Role: primary
Maria Pia Paroli
Role: primary
Maria Sole Chimenti
Role: primary
Paolo Moscato
Role: primary
Daniela Marotto
Role: primary
Annamaria Iagnocco
Role: primary
Rosetta Vitetta
Role: primary
Ombretta Viapiana
Role: primary
Soad Hashad
Role: primary
Awatif Abushhaiwia
Role: primary
Benoit Suzon
Role: primary
Luz Elena Concha Del Rio
Role: primary
Andrea Hinojosa-Azaola
Role: primary
Joanna Makowska
Role: primary
Ewa Wiesik-Szewczyk
Role: primary
Daniela Opris-Belinski
Role: primary
Zahraa Moafa
Role: primary
Sulaiman M Al-Mayouf
Role: primary
Ibrahim AlMaghlouth
Role: primary
Alex Fonollosa-Calduch
Role: primary
Guillermo Ruiz-Irastorza
Role: primary
José José Hernández-Rodríguez
Role: primary
Fernando Tornero Romero
Role: primary
Andrés González-García
Role: primary
Inés Hernanz Rodriguez
Role: primary
Natalia Palmou-Fontana
Role: primary
Adrián Mayo-Juanatey
Role: primary
Maissa Thabet
Role: primary
Seher Şener
Role: primary
Şükran Erten
Role: primary
Abdurrahman Tufan
Role: primary
Ezgi D Batu
Role: primary
Cemal Bes
Role: primary
Gulen Hatemi
Role: primary
Haner Direskeneli
Role: primary
Fatos Onen
Role: primary
Soysal Gündüz Özgül
Role: primary
Emre Bilgin
Role: primary
Ali Şahin
Role: primary
Oksana Boyarchuk
Role: primary
References
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Gaggiano C, Vitale A, Obici L, Merlini G, Soriano A, Viapiana O, Cattalini M, Maggio MC, Lopalco G, Montin D, Jaber MA, Dagna L, Manna R, Insalaco A, Piga M, La Torre F, Berlengiero V, Gelardi V, Ciarcia L, Emmi G, Ruscitti P, Caso F, Cimaz R, Hernandez-Rodriguez J, Parronchi P, Sicignano LL, Verrecchia E, Iannone F, Sota J, Grosso S, Salvarani C, Frediani B, Giacomelli R, Mencarelli MA, Renieri A, Rigante D, Cantarini L. Clinical Features at Onset and Genetic Characterization of Pediatric and Adult Patients with TNF-alpha Receptor-Associated Periodic Syndrome (TRAPS): A Series of 80 Cases from the AIDA Network. Mediators Inflamm. 2020 Aug 7;2020:8562485. doi: 10.1155/2020/8562485. eCollection 2020.
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BACKGROUND
Vitale A, Sota J, Obici L, Ricco N, Maggio MC, Cattalini M, Ruscitti P, Caso F, Manna R, Viapiana O, Caggiano V, Emmi G, Insalaco A, Montin D, Licciardi F, Soriano A, Dagna L, Salvarani C, Lamacchia V, Hernandez-Rodriguez J, Giacomelli R, Frediani B, Renieri A, Cantarini L. Role of Colchicine Treatment in Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS): Real-Life Data from the AIDA Network. Mediators Inflamm. 2020 May 27;2020:1936960. doi: 10.1155/2020/1936960. eCollection 2020.
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BACKGROUND
Gaggiano C, Rigante D, Hernandez-Rodriguez J, Vitale A, Tarsia M, Soriano A, Lopalco G, Iannone F, Abdel Jaber M, Giacomelli R, Wiesik-Szewczyk E, Cattalini M, Frassi M, Piga M, Ragab G, Sota J, Zunica F, Floris A, Sabato V, Hegazy MT, Araujo O, Pelegrin L, Fabbiani A, Renieri A, Grosso S, Fabiani C, Frediani B, Cantarini L. Anakinra and canakinumab for patients with R92Q-associated autoinflammatory syndrome: a multicenter observational study from the AIDA Network. Ther Adv Musculoskelet Dis. 2021 Sep 9;13:1759720X211037178. doi: 10.1177/1759720X211037178. eCollection 2021.
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BACKGROUND
Sota J, Rigante D, Cimaz R, Cattalini M, Frassi M, Manna R, Sicignano LL, Verrecchia E, Aragona E, Maggio MC, Lopalco G, Emmi G, Parronchi P, Cauli A, Wiesik-Szewczyk E, Hernandez-Rodriguez J, Gaggiano C, Tarsia M, Mourabi M, Ragab G, Vitale A, Fabiani C, Frediani B, Lamacchia V, Renieri A, Cantarini L; Autoinflammatory Diseases Alliance (AIDA) and the Autoinflammatory Diseases Working Group of the Italian Society of Rheumatology (SIR). Drug survival of anakinra and canakinumab in monogenic autoinflammatory diseases: observational study from the International AIDA Registry. Rheumatology (Oxford). 2021 Dec 1;60(12):5705-5712. doi: 10.1093/rheumatology/keab419.
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BACKGROUND
Sota J, Rigante D, Lopalco G, Emmi G, Gentileschi S, Gaggiano C, Ciarcia L, Berlengiero V, Mourabi M, Ricco N, Barneschi S, Mattioli I, Tosi GM, Frediani B, Tarsia M, di Scala G, Vitale A, Iannone F, Fabiani C, Cantarini L. Clinical profile and evolution of patients with juvenile-onset Behcet's syndrome over a 25-year period: insights from the AIDA network. Intern Emerg Med. 2021 Nov;16(8):2163-2171. doi: 10.1007/s11739-021-02725-9. Epub 2021 Apr 9.
Reference Type
BACKGROUND
Vitale A, Obici L, Cattalini M, Lopalco G, Merlini G, Ricco N, Soriano A, La Torre F, Verrecchia E, Insalaco A, Dagna L, Jaber MA, Montin D, Emmi G, Ciarcia L, Barneschi S, Parronchi P, Ruscitti P, Maggio MC, Viapiana O, Sota J, Gaggiano C, Giacomelli R, Sicignano LL, Manna R, Renieri A, Lo Rizzo C, Frediani B, Rigante D, Cantarini L. Biotechnological Agents for Patients With Tumor Necrosis Factor Receptor Associated Periodic Syndrome-Therapeutic Outcome and Predictors of Response: Real-Life Data From the AIDA Network. Front Med (Lausanne). 2021 Jul 8;8:668173. doi: 10.3389/fmed.2021.668173. eCollection 2021.
Reference Type
BACKGROUND
Tarsia M, Vitale A, Gaggiano C, Sota J, Maselli A, Bellantonio C, Guerriero S, Dammacco R, La Torre F, Ragab G, Hegazy MT, Fonollosa A, Paroli MP, Del Giudice E, Maggio MC, Cattalini M, Fotis L, Conti G, Mauro A, Civino A, Diomeda F, de-la-Torre A, Cifuentes-Gonzalez C, Tharwat S, Hernandez-Rodriguez J, Gomez-Caverzaschi V, Pelegrin L, Babu K, Gupta V, Minoia F, Ruscitti P, Costi S, Breda L, La Bella S, Conforti A, Mazzei MA, Carreno E, Amin RH, Grosso S, Frediani B, Tosi GM, Balistreri A, Cantarini L, Fabiani C. Effectiveness and Safety of Biosimilars in Pediatric Non-infectious Uveitis: Real-Life Data from the International AIDA Network Uveitis Registry. Ophthalmol Ther. 2024 Mar;13(3):761-774. doi: 10.1007/s40123-023-00863-1. Epub 2024 Jan 11.
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DERIVED
Ruscitti P, Sota J, Vitale A, Lopalco G, Iannone F, Morrone M, Giardini HAM, D'Agostin MA, Antonelli IPB, Almaghlouth I, Asfina KN, Khalil N, Sfikakis PP, Laskari K, Tektonidou M, Ciccia F, Iacono D, Riccio F, Ragab G, Hussein MA, Govoni M, Ruffilli F, Direskeneli H, Alibaz-Oner F, Giacomelli R, Navarini L, Bartoloni E, Riccucci I, Martin-Nares E, Torres-Ruiz J, Cipriani P, Di Cola I, Hernandez-Rodriguez J, Gomez-Caverzaschi V, Dagna L, Tomelleri A, Makowska J, Brzezinska O, Iagnocco A, Bellis E, Caggiano V, Gaggiano C, Tarsia M, Mormile I, Emmi G, Sfriso P, Monti S, Erten S, Del Giudice E, Lubrano R, Conti G, Olivieri AN, Lo Gullo A, Tharwat S, Karamanakos A, Gidaro A, Maggio MC, La Torre F, Cardinale F, Ogunjimi B, Maier A, Sebastiani GD, Opris-Belinski D, Frassi M, Viapiana O, Bizzi E, Carubbi F, Fotis L, Tufan A, Kardas RC, Wiesik-Szewczyk E, Jahnz-Rozyk K, Fabiani C, Frediani B, Balistreri A, Rigante D, Cantarini L. The administration of methotrexate in patients with Still's disease, "real-life" findings from AIDA Network Still Disease Registry. Semin Arthritis Rheum. 2023 Oct;62:152244. doi: 10.1016/j.semarthrit.2023.152244. Epub 2023 Jul 21.
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DERIVED
Gaggiano C, Maselli A, Sfikakis PP, Laskari K, Ragab G, Hegazy MT, Laymouna AH, Lopalco G, Almaghlouth IA, Asfina KN, Alahmed O, Giardini Mayrink HA, Parente de Brito Antonelli I, Cattalini M, Piga M, Sota J, Gentileschi S, Maggio MC, Opris-Belinski D, Hatemi G, Insalaco A, Olivieri AN, Tufan A, Karadeniz H, Kardas RC, La Torre F, Cardinale F, Marino A, Guerriero S, Ruscitti P, Tarsia M, Vitale A, Caggiano V, Telesca S, Iannone F, Parretti V, Frassi M, Aragona E, Ciccia F, Wiesik-Szewczyk E, Ionescu R, Sahin A, Akkoc N, Hinojosa-Azaola A, Tharwat S, Hernandez-Rodriguez J, Espinosa G, Conti G, Del Giudice E, Govoni M, Emmi G, Fabiani C, Balistreri A, Frediani B, Rigante D, Cantarini L; AIDA Network. Musculoskeletal manifestations in children with Behcet's syndrome: data from the AIDA Network Behcet's Syndrome Registry. Intern Emerg Med. 2023 Apr;18(3):743-754. doi: 10.1007/s11739-023-03215-w. Epub 2023 Mar 7.
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DERIVED
Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesik-Szewczyk E, Ait-Idir D, Conti G, Iezzi L, Maggio MC, Cattalini M, Torre F, Lopalco G, Verrecchia E, de Paulis A, Sahin A, Insalaco A, Sfikakis PP, Marino A, Frassi M, Ogunjimi B, Opris-Belinski D, Parronchi P, Emmi G, Shahram F, Ciccia F, Piga M, Hernandez-Rodriguez J, Pereira RMR, Alessio M, Naddei R, Olivieri AN, Giudice ED, Sfriso P, Ruscitti P, Gobbi FL, Kucuk H, Sota J, Hussein MA, Malizia G, Jahnz-Rozyk K, Sari-Hamidou R, Romeo M, Ricci F, Cardinale F, Iannone F, Casa FD, Natale MF, Laskari K, Giani T, Franceschini F, Sabato V, Yildirim D, Caggiano V, Hegazy MT, Marzo RD, Kucharczyk A, Khellaf G, Tarsia M, Almaghlouth IA, Laymouna AH, Mastrorilli V, Dotta L, Benacquista L, Grosso S, Crisafulli F, Parretti V, Giordano HF, Mahmoud AAA, Nuzzolese R, Musso M, Chighizola CB, Gentileschi S, Morrone M, Cola ID, Spedicato V, Giardini HAM, Vasi I, Renieri A, Fabbiani A, Mencarelli MA, Frediani B, Balistreri A, Tosi GM, Fabiani C, Lidar M, Rigante D, Cantarini L. The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases. Front Med (Lausanne). 2022 Sep 9;9:980679. doi: 10.3389/fmed.2022.980679. eCollection 2022.
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DERIVED
Della Casa F, Vitale A, Cattalini M, La Torre F, Capozio G, Del Giudice E, Maggio MC, Conti G, Alessio M, Ogunjimi B, Ragab G, Emmi G, Aragona E, Giani T, Lopalco G, Parronchi P, Shahram F, Verrecchia E, Ricci F, Cardinale F, Di Noi S, Nuzzolese R, Lubrano R, Patroniti S, Naddei R, Sabato V, Hussein MA, Dotta L, Mastrorilli V, Gentileschi S, Tufan A, Caggiano V, Hegazy MT, Sota J, Almaghlouth IA, Ibrahim A, Wiesik-Szewczyk E, Ozkiziltas B, Grosso S, Frassi M, Tarsia M, Pereira RMR, Taymour M, Gaggiano C, Colella S, Fabiani C, Morrone M, Ruscitti P, Frediani B, Spedicato V, Giardini HAM, Balistreri A, Rigante D, Cantarini L. Development and implementation of the AIDA International Registry for patients with Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis syndrome. Front Pediatr. 2022 Jul 22;10:930305. doi: 10.3389/fped.2022.930305. eCollection 2022.
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DERIVED
Vitale A, Caggiano V, Della Casa F, Hernandez-Rodriguez 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, Akkoc 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-Rozyk 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 L. Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome. Front Med (Lausanne). 2022 Jul 11;9:926500. doi: 10.3389/fmed.2022.926500. eCollection 2022.
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DERIVED
Vitale A, Della Casa F, Ragab G, Almaghlouth IA, Lopalco G, Pereira RM, Guerriero S, Govoni M, Sfikakis PP, Giacomelli R, Ciccia F, Monti S, Ruscitti P, Piga M, Lomater C, Tufan A, Opris-Belinski D, Emmi G, Hernandez-Rodriguez J, Sahin A, Sebastiani GD, Bartoloni E, Akkoc N, Gunduz OS, Cattalini M, Conti G, Hatemi G, Maier A, Parronchi P, Del Giudice E, Erten S, Insalaco A, Li Gobbi F, Maggio MC, Shahram F, Caggiano V, Hegazy MT, Asfina KN, Morrone M, Prado LL, Dammacco R, Ruffilli F, Arida A, Navarini L, Pantano I, Cavagna L, Conforti A, Cauli A, Marucco EM, Kucuk H, Ionescu R, Mattioli I, Espinosa G, Araujo O, Karkas B, Canofari C, Sota J, Laymouna AH, Bedaiwi AA, Colella S, Giardini HAM, Albano V, Lo Monaco A, Fragoulis GE, Kardas RC, Berlengiero V, Hussein MA, Ricci F, La Torre F, Rigante D, Wiesik-Szewczyk E, Frassi M, Gentileschi S, Tosi GM, Dagostin MA, Mahmoud AAA, Tarsia M, Alessio G, Cimaz R, Giani T, Gaggiano C, Iannone F, Cipriani P, Mourabi M, Spedicato V, Barneschi S, Aragona E, Balistreri A, Frediani B, Fabiani C, Cantarini L; Autoinflammatory Diseases Alliance (AIDA) Network. Development and implementation of the AIDA International Registry for patients with Behcet's disease. Intern Emerg Med. 2022 Oct;17(7):1977-1986. doi: 10.1007/s11739-022-03038-1. Epub 2022 Jul 14.
Reference Type
DERIVED
Della Casa F, Vitale A, Lopalco G, Ruscitti P, Ciccia F, Emmi G, Cattalini M, Wiesik-Szewczyk E, Maggio MC, Ogunjimi B, Sfikakis PP, Tufan A, Al-Mayouf SM, Del Giudice E, Aragona E, La Torre F, Sota J, Colella S, Di Cola I, Iacono D, Mattioli I, Jahnz-Rozyk K, Joos R, Laskari K, Gaggiano C, Abbruzzese A, Cipriani P, Rozza G, AlSaleem A, Yildirim D, Tarsia M, Ragab G, Ricci F, Cardinale F, Korzeniowska M, Frassi M, Caggiano V, Saad MA, Pereira RM, Berlengiero V, Gentileschi S, Guerriero S, Giani T, Gelardi V, Iannone F, Giardini HAM, Almaghlouth IA, Kardas RC, Ait-Idir D, Frediani B, Balistreri A, Fabiani C, Rigante D, Cantarini L. Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases. Front Med (Lausanne). 2022 Jun 10;9:908501. doi: 10.3389/fmed.2022.908501. eCollection 2022.
Reference Type
DERIVED
Vitale A, Della Casa F, Lopalco G, Pereira RM, Ruscitti P, Giacomelli R, Ragab G, La Torre F, Bartoloni E, Del Giudice E, Lomater C, Emmi G, Govoni M, Maggio MC, Maier A, Makowska J, Ogunjimi B, Sfikakis PP, Sfriso P, Gaggiano C, Iannone F, Dagostin MA, Di Cola I, Navarini L, Ahmed Mahmoud AA, Cardinale F, Riccucci I, Paroli MP, Marucco EM, Mattioli I, Sota J, Abbruzzese A, Antonelli IPB, Cipriani P, Tufan A, Fabiani C, Ramadan MM, Cattalini M, Kardas RC, Sebastiani GD, Giardini HAM, Hernandez-Rodriguez J, Mastrorilli V, Wiesik-Szewczyk E, Frassi M, Caggiano V, Telesca S, Giordano HF, Guadalupi E, Giani T, Renieri A, Colella S, Cataldi G, Gentile M, Fabbiani A, Al-Maghlouth IA, Frediani B, Balistreri A, Rigante D, Cantarini L. Development and Implementation of the AIDA International Registry for Patients With Still's Disease. Front Med (Lausanne). 2022 Apr 7;9:878797. doi: 10.3389/fmed.2022.878797. eCollection 2022.
Reference Type
DERIVED
Related Links
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https://aidanetwork.org/en/
Website of the AIDA Network
Other Identifiers
Review additional registry numbers or institutional identifiers associated with this trial.
AIDA V.04 19.05.2021
Identifier Type: -
Identifier Source: org_study_id
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