Frontiers in Medicine (Jun 2022)
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,
- Benson Ogunjimi,
- Benson Ogunjimi,
- Benson Ogunjimi,
- Petros P. Sfikakis,
- Abdurrahman Tufan,
- Sulaiman M. Al-Mayouf,
- Emanuela Del Giudice,
- Emma Aragona,
- Francesco La Torre,
- Jurgen Sota,
- Sergio Colella,
- Ilenia Di Cola,
- Daniela Iacono,
- Irene Mattioli,
- Karina Jahnz-Rózyk,
- Rik Joos,
- Rik Joos,
- Katerina Laskari,
- Carla Gaggiano,
- Anna Abbruzzese,
- Paola Cipriani,
- Gelsomina Rozza,
- Alhanouf AlSaleem,
- Derya Yildirim,
- Maria Tarsia,
- Gaafar Ragab,
- Gaafar Ragab,
- Francesca Ricci,
- Fabio Cardinale,
- Marcelina Korzeniowska,
- Micol Frassi,
- Valeria Caggiano,
- Moustafa Ali Saad,
- Rosa Maria Pereira,
- Virginia Berlengiero,
- Stefano Gentileschi,
- Silvana Guerriero,
- Teresa Giani,
- Viviana Gelardi,
- Florenzo Iannone,
- Henrique Ayres Mayrink Giardini,
- Ibrahim A. Almaghlouth,
- Ibrahim A. Almaghlouth,
- Riza Can Kardas,
- Djouher Ait-Idir,
- Bruno Frediani,
- Alberto Balistreri,
- Claudia Fabiani,
- Donato Rigante,
- Donato Rigante,
- Luca Cantarini
Affiliations
- Francesca Della Casa
- Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy
- Antonio Vitale
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Giuseppe Lopalco
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Piero Ruscitti
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Francesco Ciccia
- Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy
- Giacomo Emmi
- Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Marco Cattalini
- Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
- Ewa Wiesik-Szewczyk
- Department 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 Maggio
- University Department PROMISE “G. D'Alessandro”, University of Palermo, Palermo, Italy
- Benson Ogunjimi
- 0Department of Pediatrics, Antwerp University Hospital, Edegem, Belgium
- Benson Ogunjimi
- 1Center for Health Economics Research and Modeling Infectious Diseases (CHERMID), Vaccine & Infectious Diseases Institute (VAXINFECTIO), University of Antwerp, Antwerp, Belgium
- Benson Ogunjimi
- 2Department of Rheumatology, Ziekenhuis Netwerk Antwerpen, Berchem, Belgium
- Benson Ogunjimi
- 3KidZ Health Castle, Universitair Ziekenhuis Brussel, Jette, Belgium
- Petros P. Sfikakis
- 4Joint Academic Rheumatology Program, National and Kapodistrian University of Athens Medical School, Athens, Greece
- Abdurrahman Tufan
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Sulaiman M. Al-Mayouf
- 6King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia
- Emanuela Del Giudice
- 7Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Italy
- Emma Aragona
- 8Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
- Francesco La Torre
- 9Department of Pediatrics, Pediatric Rheumatology Center, Ospedale “Giovanni XXIII”, AOU Consorziale Policlinico, Bari, Italy
- Jurgen Sota
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Sergio Colella
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Ilenia Di Cola
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Daniela Iacono
- Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy
- Irene Mattioli
- Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Karina Jahnz-Rózyk
- Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
- Rik Joos
- 0Department of Pediatrics, Antwerp University Hospital, Edegem, Belgium
- Rik Joos
- 2Department of Rheumatology, Ziekenhuis Netwerk Antwerpen, Berchem, Belgium
- Katerina Laskari
- 4Joint Academic Rheumatology Program, National and Kapodistrian University of Athens Medical School, Athens, Greece
- Carla Gaggiano
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Anna Abbruzzese
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Paola Cipriani
- Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Gelsomina Rozza
- Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Napoli, Italy
- Alhanouf AlSaleem
- 0Department of Pediatrics King Faisal Specialist Hospital and Research Center Riyadh, Riyadh, Saudi Arabia
- Derya Yildirim
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Maria Tarsia
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Gaafar Ragab
- 1Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
- Gaafar Ragab
- 2Faculty of Medicine, Newgiza University (NGU), Giza, Egypt
- Francesca Ricci
- Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
- Fabio Cardinale
- 9Department of Pediatrics, Pediatric Rheumatology Center, Ospedale “Giovanni XXIII”, AOU Consorziale Policlinico, Bari, Italy
- Marcelina Korzeniowska
- 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
- 3Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
- Valeria Caggiano
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Moustafa Ali Saad
- 1Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
- Rosa Maria Pereira
- 4Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
- Virginia Berlengiero
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Stefano Gentileschi
- 5Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Silvana Guerriero
- 6Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy
- Teresa Giani
- 7Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan, Milan, Italy
- Viviana Gelardi
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- Florenzo Iannone
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Henrique Ayres Mayrink Giardini
- 4Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
- Ibrahim A. Almaghlouth
- 8Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
- Ibrahim A. Almaghlouth
- 9College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
- Riza Can Kardas
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Djouher Ait-Idir
- 0Research Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Department of Biology, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria
- Bruno Frediani
- 5Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Alberto Balistreri
- 1Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy
- Claudia Fabiani
- 2Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
- Donato Rigante
- 3Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Donato Rigante
- 4Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy
- Luca Cantarini
- Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena, Siena, Italy
- DOI
- https://doi.org/10.3389/fmed.2022.908501
- Journal volume & issue
-
Vol. 9
Abstract
ObjectiveThis 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).MethodsThis 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.ResultsThe 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.ConclusionsThe 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. NCT 05200715 available at https://clinicaltrials.gov/.
Keywords
- autoinflammatory diseases
- personalized medicine
- precision medicine
- rare diseases
- International Registry
