Development and implementation of the AIDA International Registry for patients with Behçet's disease.

Adult Behcet Syndrome / diagnosis Child Humans Prospective Studies Registries Retrospective Studies
Autoinflammatory diseases Behçet’s disease International registry Precision medicine Rare diseases Uveitis

Journal

Internal and emergency medicine
ISSN: 1970-9366
Titre abrégé: Intern Emerg Med
Pays: Italy
ID NLM: 101263418

Informations de publication

Date de publication:
10 2022
Historique:
received: 18 02 2022
accepted: 19 06 2022
pubmed: 14 7 2022
medline: 4 10 2022
entrez: 13 7 2022
Statut: ppublish

Résumé

Purpose of the present paper is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients with Behçet's disease (BD). The Registry is a clinical physician-driven non-population- and electronic-based instrument implemented for the retrospective and prospective collection of real-life data about demographics, clinical, therapeutic, laboratory, instrumental and socioeconomic information from BD patients; the Registry is based on the Research Electronic Data Capture (REDCap) tool, which is thought to collect standardised information for clinical real-life research, and has been realised to change over time according to future scientific acquisitions and potentially communicate with other existing and future Registries dedicated to BD. Starting from January 31st, 2021, to February 7th, 2022, 110 centres 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 5993 fields organised into 16 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. The development of the AIDA International Registry for BD patients will facilitate the collection of standardised data leading to real-world evidence, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately optimisation of scientific efforts and implementation of standardised care.Trial registration NCT05200715 in 21/01/2022.

Identifiants

DOI: 10.1007/s11739-022-03038-1 PMID: 35831701 PMC: PMC9522756
pubmed: 35831701
doi: 10.1007/s11739-022-03038-1
pii: 10.1007/s11739-022-03038-1
pmc: PMC9522756
doi:

Banques de données

ClinicalTrials.gov
['NCT05200715']

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1977-1986

Commentaires et corrections

Type : CommentIn

Informations de copyright

© 2022. The Author(s).

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Auteurs

Antonio Vitale (A)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Francesca Della Casa (F)

Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy.

Gaafar Ragab (G)

Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Faculty of Medicine, Newgiza University (NGU), Giza, Egypt.

Ibrahim A Almaghlouth (IA)

Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.

Giuseppe Lopalco (G)

Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.

Rosa Maria Pereira (RM)

Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.

Silvana Guerriero (S)

Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.

Marcello Govoni (M)

Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.

Petros P Sfikakis (PP)

Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.

Roberto Giacomelli (R)

Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.

Francesco Ciccia (F)

Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.

Sara Monti (S)

Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy.

Piero Ruscitti (P)

Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.

Matteo Piga (M)

Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.

Claudia Lomater (C)

AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.

Abdurrahman Tufan (A)

Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey.

Daniela Opris-Belinski (D)

Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.

Giacomo Emmi (G)

Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.

José Hernández-Rodríguez (J)

Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.

Ali Şahin (A)

Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey.

Gian Domenico Sebastiani (GD)

U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.

Elena Bartoloni (E)

Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.

Nurullah Akkoç (N)

Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey.

Özgül Soysal Gündüz (ÖS)

Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey.

Marco Cattalini (M)

Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.

Giovanni Conti (G)

Pediatric Nephrology Unit, AOU Policlinic "G Martino", University of Messina, Messina, Italy.

Gulen Hatemi (G)

Division of Rheumatology, Department of Internal Medicine and Behçet's Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey.

Armin Maier (A)

Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.

Paola Parronchi (P)

Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.

Emanuela Del Giudice (E)

Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy.

Sukran Erten (S)

Department of Rheumatology, Ankara City Hospital, Ankara, Turkey.

Antonella Insalaco (A)

Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (ERN-RITA Center), Rome, Italy.

Francesca Li Gobbi (F)

Rheumatology Unit, San Giovanni di Dio Hospital, Florence, Italy.

Maria Cristina Maggio (MC)

University Department Pro.Sa.M.I. "G. D'Alessandro", University of Palermo, Palermo, Italy.

Farhad Shahram (F)

Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.

Valeria Caggiano (V)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Mohamed Tharwat Hegazy (MT)

Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.
Faculty of Medicine, Newgiza University (NGU), Giza, Egypt.

Kazi Nur Asfina (KN)

College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.

Maria Morrone (M)

Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.

Leandro L Prado (LL)

Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.

Rosanna Dammacco (R)

Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.

Francesca Ruffilli (F)

Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.

Aikaterini Arida (A)

Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.

Luca Navarini (L)

Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy.

Ilenia Pantano (I)

Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.

Lorenzo Cavagna (L)

Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy.

Alessandro Conforti (A)

Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.

Alberto Cauli (A)

Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.

Elena Maria Marucco (EM)

AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy.

Hamit Kucuk (H)

Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey.

Ruxandra Ionescu (R)

Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.

Irene Mattioli (I)

Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.

Gerard Espinosa (G)

Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.

Olga Araújo (O)

Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.

Burak Karkaş (B)

Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey.

Claudia Canofari (C)

U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy.

Jurgen Sota (J)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Ahmed Hatem Laymouna (AH)

Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.

Asma A Bedaiwi (AA)

Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia.

Sergio Colella (S)

Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.

Henrique Ayres M Giardini (HAM)

Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.

Valeria Albano (V)

Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.

Andrea Lo Monaco (A)

Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.

George E Fragoulis (GE)

Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.

Riza Can Kardas (RC)

Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey.

Virginia Berlengiero (V)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Mohamed A Hussein (MA)

Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.

Francesca Ricci (F)

Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy.

Francesco La Torre (F)

Department of Pediatrics, Ospedale "Giovanni XXIII", Pediatric Rheumatology Center, AOU Consorziale Policlinico, Bari, Italy.

Donato Rigante (D)

Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy.

Ewa Więsik-Szewczyk (E)

Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland.

Micol Frassi (M)

Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.

Stefano Gentileschi (S)

Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.

Gian Marco Tosi (GM)

Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.

Marilia Ambiel Dagostin (MA)

Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil.

Ayman Abdel-Monem Ahmed Mahmoud (AAA)

Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt.

Maria Tarsia (M)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Giovanni Alessio (G)

Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.

Rolando Cimaz (R)

ASST G. Pini-CTO, Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.

Teresa Giani (T)

ASST G. Pini-CTO, Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy.

Carla Gaggiano (C)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Florenzo Iannone (F)

Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.

Paola Cipriani (P)

Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.

Mariam Mourabi (M)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Veronica Spedicato (V)

Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.

Sara Barneschi (S)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy.

Emma Aragona (E)

Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.

Alberto Balistreri (A)

Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy.

Bruno Frediani (B)

Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy.

Claudia Fabiani (C)

Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy.

Luca Cantarini (L)

Rheumatology Unit, Policlinico "Le Scotte", Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, University of Siena, viale Bracci 16, 53100, Siena, Italy. cantariniluca@hotmail.com.
ORCID: 0000-0002-7352-1275

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Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Development and implementation of the AIDA...
questionsmedicales.fr › Maladies de la peau et du tissu conjonctif › Maladies de la peau › Dermatoses vasculaires › Maladie de Behçet › Development and implementation of the AIDA...
questionsmedicales.fr › Personnes › Tranches d'âge › Enfant › Development and implementation of the AIDA...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Development and implementation of the AIDA...
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