Frontiers in Medicine (Jul 2022)
Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome
- Jurgen Sota,
- Antonio Vitale,
- Ewa Więsik-Szewczyk,
- Micol Frassi,
- Giuseppe Lopalco,
- Giacomo Emmi,
- Marcello Govoni,
- Amato de Paulis,
- Amato de Paulis,
- Achille Marino,
- Antonio Gidaro,
- Sara Monti,
- Daniela Opris-Belinski,
- Rosa Maria R. Pereira,
- Karina Jahnz-Rózyk,
- Carla Gaggiano,
- Francesca Crisafulli,
- Florenzo Iannone,
- Irene Mattioli,
- Francesca Ruffilli,
- Ilaria Mormile,
- Katarzyna Rybak,
- Katarzyna Rybak,
- Valeria Caggiano,
- Paolo Airò,
- Abdurrahman Tufan,
- Stefano Gentileschi,
- Gaafar Ragab,
- Gaafar Ragab,
- Ibrahim A. Almaghlouth,
- Ibrahim A. Almaghlouth,
- Adham Aboul-Fotouh Khalil,
- Marco Cattalini,
- Francesco La Torre,
- Maria Tarsia,
- Henrique A. Mayrink Giardini,
- Moustafa Ali Saad,
- Monica Bocchia,
- Federico Caroni,
- Teresa Giani,
- Elisa Cinotti,
- Piero Ruscitti,
- Pietro Rubegni,
- Marília A. Dagostin,
- Bruno Frediani,
- Aslihan Avanoglu Guler,
- Francesca Della Casa,
- Maria Cristina Maggio,
- Andreas Recke,
- Dagmar von Bubnoff,
- Karoline Krause,
- Alberto Balistreri,
- Claudia Fabiani,
- Donato Rigante,
- Donato Rigante,
- Luca Cantarini
Affiliations
- Jurgen Sota
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- Antonio Vitale
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- Ewa Więsik-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
- Micol Frassi
- Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
- Giuseppe Lopalco
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Giacomo Emmi
- Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Marcello Govoni
- Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, University of Ferrara, Ferrara, Italy
- Amato de Paulis
- Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
- Amato de Paulis
- Department of Translational Medical Sciences, Center for Basic and Clinical Immunology Research (CISI), "World Allergy Organisation Center of Excellence, University of Naples Federico II, Naples, Italy
- Achille Marino
- Unit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy
- Antonio Gidaro
- 0Department of Biomedical and Clinical Sciences Luigi Sacco, Luigi Sacco Hospital, University of Milan, Milan, Italy
- Sara Monti
- 1Rheumatology Department, Istituto di ricovero e cura a carattere scientifico Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy
- Daniela Opris-Belinski
- 2Department of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Rosa Maria R. Pereira
- 3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
- 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
- Carla Gaggiano
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- Francesca Crisafulli
- Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
- Florenzo Iannone
- Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
- Irene Mattioli
- Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
- Francesca Ruffilli
- Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, University of Ferrara, Ferrara, Italy
- Ilaria Mormile
- Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
- Katarzyna Rybak
- Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
- Katarzyna Rybak
- 4Department of Internal Medicine, Nephrology and Endocrinology, Clinical District Hospital No. 2, Rzeszów, Poland
- Valeria Caggiano
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- Paolo Airò
- Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
- Abdurrahman Tufan
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Stefano Gentileschi
- 6Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
- Gaafar Ragab
- 7Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt
- Gaafar Ragab
- 8Faculty of Medicine, Newgiza University (NGU), Giza, Egypt
- Ibrahim A. Almaghlouth
- 9Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
- Ibrahim A. Almaghlouth
- 0College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
- Adham Aboul-Fotouh Khalil
- 1The Egyptian School for Musculoskeletal Ultrasonography (EgySMUS), Cairo, Egypt
- Marco Cattalini
- 2Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
- Francesco La Torre
- 3Clinical Pediatrics, University of Bari, Bari, Italy
- Maria Tarsia
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- Henrique A. Mayrink Giardini
- 3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
- Moustafa Ali Saad
- 7Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt
- Monica Bocchia
- 4Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy
- Federico Caroni
- 4Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy
- Teresa Giani
- Unit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy
- Elisa Cinotti
- 5Unit of Dermatology, Department of Medical, Surgical and Neurological Sciences, University of Siena, Siena, Italy
- Piero Ruscitti
- 6Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
- Pietro Rubegni
- 5Unit of Dermatology, Department of Medical, Surgical and Neurological Sciences, University of Siena, Siena, Italy
- Marília A. Dagostin
- 3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
- Bruno Frediani
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Aslihan Avanoglu Guler
- 5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
- Francesca Della Casa
- Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
- Maria Cristina Maggio
- 7University Department Pro.Sa.M.I. “G. D'Alessandro”, University of Palermo, Palermo, Italy
- Andreas Recke
- 8Department of Dermatology, Allergology and Venerology, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany
- Dagmar von Bubnoff
- 8Department of Dermatology, Allergology and Venerology, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany
- Karoline Krause
- 9Department of Dermatology, Venerology and Allergology, Charité–Universitätsmedizin Berlin, Berlin, Germany
- Alberto Balistreri
- 0Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy
- Claudia Fabiani
- 1Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
- Donato Rigante
- 2Department of Life Sciences and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Donato Rigante
- 3Institute of Pediatrics, Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore, Rome, Italy
- Luca Cantarini
- Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
- DOI
- https://doi.org/10.3389/fmed.2022.931189
- Journal volume & issue
-
Vol. 9
Abstract
ObjectiveThe present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.MethodsThis is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other existing or future similar registries.ResultsSince its launch, 113 centers from 23 countries in 4 continents have been involved. Fifty-seven have already obtained the approval from their local Ethics Committees. The platform counts 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) at current (April 28th, 2022). The registry collects baseline and follow-up data using 3,924 fields organized into 25 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, laboratory, instrumental exams, therapies, socioeconomic information, and healthcare access.ConclusionsThis International Registry for patients with Schnitzler's syndrome facilitates standardized data collection, enabling international collaborative projects through data sharing and dissemination of knowledge; in turn, it will shed light into many blind spots characterizing this complex autoinflammatory disorder.
Keywords
- autoinflammatory disease
- rare disease
- international registry
- personalized medicine
- biotherapies
- interleukin-1
