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

Autor: 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., Della Casa F; Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy., 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., 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., Lopalco G; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy., Pereira RM; Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil., Guerriero S; Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy., Govoni M; Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy., Sfikakis PP; Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece., Giacomelli R; Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy., Ciccia F; Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy., Monti S; Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy., Ruscitti P; Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy., Piga M; Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy., Lomater C; AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy., Tufan A; Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey., Opris-Belinski D; Carol Davila University of Medicine and Pharmacy, Bucharest, Romania., Emmi G; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy., 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., Şahin A; Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey., Sebastiani GD; U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy., Bartoloni E; Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy., Akkoç N; Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey., Gündüz ÖS; Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey., Cattalini M; Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy., Conti G; Pediatric Nephrology Unit, AOU Policlinic 'G Martino', University of Messina, Messina, Italy., Hatemi G; Division of Rheumatology, Department of Internal Medicine and Behçet's Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey., Maier A; Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy., Parronchi P; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy., Del Giudice E; Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy., Erten S; Department of Rheumatology, Ankara City Hospital, Ankara, Turkey., Insalaco A; Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS (ERN-RITA Center), Rome, Italy., Li Gobbi F; Rheumatology Unit, San Giovanni di Dio Hospital, Florence, Italy., Maggio MC; University Department Pro.Sa.M.I. 'G. D'Alessandro', University of Palermo, Palermo, Italy., Shahram F; Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran., 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., 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., Asfina KN; College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia., Morrone M; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy., Prado LL; Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil., Dammacco R; Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy., Ruffilli F; Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy., Arida A; Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece., Navarini L; Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Università Campus Bio-Medico di Roma, Rome, Italy., Pantano I; Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy., Cavagna L; Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy., Conforti A; Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy., Cauli A; Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy., Marucco EM; AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy., Kucuk H; Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey., Ionescu R; Carol Davila University of Medicine and Pharmacy, Bucharest, Romania., Mattioli I; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy., Espinosa G; Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain., Araújo O; Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain., Karkaş B; Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey., Canofari C; U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy., 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., Laymouna AH; Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt., Bedaiwi AA; Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia., Colella S; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy., Giardini HAM; Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil., Albano V; Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy., Lo Monaco A; Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy., Fragoulis GE; Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece., Kardas RC; Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey., 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., Hussein MA; Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt., Ricci F; Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy., La Torre F; Department of Pediatrics, Ospedale 'Giovanni XXIII', Pediatric Rheumatology Center, AOU Consorziale Policlinico, Bari, Italy., 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., 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., Frassi M; Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Gentileschi S; Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy., Tosi GM; Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy., Dagostin MA; Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil., Mahmoud AAA; Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt., 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., Alessio G; Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy., 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., 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., 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., Iannone F; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy., Cipriani P; Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy., 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., Spedicato V; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy., 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., Aragona E; Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy., Balistreri A; Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy., Frediani B; Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy., Fabiani C; Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy., 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.
Jazyk: angličtina
Zdroj: Internal and emergency medicine [Intern Emerg Med] 2022 Oct; Vol. 17 (7), pp. 1977-1986. Date of Electronic Publication: 2022 Jul 14.
DOI: 10.1007/s11739-022-03038-1
Abstrakt: 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.
(© 2022. The Author(s).)
Databáze: MEDLINE
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