Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome
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 regi...
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| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-07-01
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| Series: | Frontiers in Medicine |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2022.931189/full |
| _version_ | 1828747325557702656 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Jurgen Sota |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-14T04:39:57Z |
| format | Article |
| id | doaj.art-7664f679c402472cb84c4f4c5e7676fe |
| institution | Directory Open Access Journal |
| issn | 2296-858X |
| language | English |
| last_indexed | 2024-04-14T04:39:57Z |
| publishDate | 2022-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj.art-7664f679c402472cb84c4f4c5e7676fe2022-12-22T02:11:42ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2022-07-01910.3389/fmed.2022.931189931189Development and implementation of the AIDA international registry for patients with Schnitzler's syndromeJurgen Sota0Antonio Vitale1Ewa Więsik-Szewczyk2Micol Frassi3Giuseppe Lopalco4Giacomo Emmi5Marcello Govoni6Amato de Paulis7Amato de Paulis8Achille Marino9Antonio Gidaro10Sara Monti11Daniela Opris-Belinski12Rosa Maria R. Pereira13Karina Jahnz-Rózyk14Carla Gaggiano15Francesca Crisafulli16Florenzo Iannone17Irene Mattioli18Francesca Ruffilli19Ilaria Mormile20Katarzyna Rybak21Katarzyna Rybak22Valeria Caggiano23Paolo Airò24Abdurrahman Tufan25Stefano Gentileschi26Gaafar Ragab27Gaafar Ragab28Ibrahim A. Almaghlouth29Ibrahim A. Almaghlouth30Adham Aboul-Fotouh Khalil31Marco Cattalini32Francesco La Torre33Maria Tarsia34Henrique A. Mayrink Giardini35Moustafa Ali Saad36Monica Bocchia37Federico Caroni38Teresa Giani39Elisa Cinotti40Piero Ruscitti41Pietro Rubegni42Marília A. Dagostin43Bruno Frediani44Aslihan Avanoglu Guler45Francesca Della Casa46Maria Cristina Maggio47Andreas Recke48Dagmar von Bubnoff49Karoline Krause50Alberto Balistreri51Claudia Fabiani52Donato Rigante53Donato Rigante54Luca Cantarini55Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, ItalyResearch Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, ItalyDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, PolandRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, ItalyRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, ItalyDepartment of Experimental and Clinical Medicine, University of Florence, Florence, ItalyRheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, University of Ferrara, Ferrara, ItalySection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, ItalyDepartment of Translational Medical Sciences, Center for Basic and Clinical Immunology Research (CISI), "World Allergy Organisation Center of Excellence, University of Naples Federico II, Naples, ItalyUnit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy0Department of Biomedical and Clinical Sciences Luigi Sacco, Luigi Sacco Hospital, University of Milan, Milan, Italy1Rheumatology Department, Istituto di ricovero e cura a carattere scientifico Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy2Department of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, BrazilDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, PolandResearch Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, ItalyRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, ItalyRheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, ItalyDepartment of Experimental and Clinical Medicine, University of Florence, Florence, ItalyRheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna - Ferrara, University of Ferrara, Ferrara, ItalySection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, ItalyDepartment of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland4Department of Internal Medicine, Nephrology and Endocrinology, Clinical District Hospital No. 2, Rzeszów, PolandResearch Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, ItalyRheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey6Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy7Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt8Faculty of Medicine, Newgiza University (NGU), Giza, Egypt9Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia0College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia1The Egyptian School for Musculoskeletal Ultrasonography (EgySMUS), Cairo, Egypt2Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy3Clinical Pediatrics, University of Bari, Bari, ItalyResearch Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil7Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt4Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, Italy4Hematology, Azienda Ospedaliera Universitaria Senese, University of Siena, Siena, ItalyUnit of Pediatric Rheumatology, ASST Gaetano Pini-CTO, Milan, Italy5Unit of Dermatology, Department of Medical, Surgical and Neurological Sciences, University of Siena, Siena, Italy6Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy5Unit of Dermatology, Department of Medical, Surgical and Neurological Sciences, University of Siena, Siena, Italy3Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey5Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, TurkeySection of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy7University Department Pro.Sa.M.I. “G. D'Alessandro”, University of Palermo, Palermo, Italy8Department of Dermatology, Allergology and Venerology, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany8Department of Dermatology, Allergology and Venerology, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany9Department of Dermatology, Venerology and Allergology, Charité–Universitätsmedizin Berlin, Berlin, Germany0Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy1Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy2Department of Life Sciences and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy3Institute of Pediatrics, Rare Diseases and Periodic Fevers Research Centre, Università Cattolica Sacro Cuore, Rome, ItalyResearch Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, ItalyObjectiveThe 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.https://www.frontiersin.org/articles/10.3389/fmed.2022.931189/fullautoinflammatory diseaserare diseaseinternational registrypersonalized medicinebiotherapiesinterleukin-1 |
| spellingShingle | 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 Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome Frontiers in Medicine autoinflammatory disease rare disease international registry personalized medicine biotherapies interleukin-1 |
| title | Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome |
| title_full | Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome |
| title_fullStr | Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome |
| title_full_unstemmed | Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome |
| title_short | Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome |
| title_sort | development and implementation of the aida international registry for patients with schnitzler s syndrome |
| topic | autoinflammatory disease rare disease international registry personalized medicine biotherapies interleukin-1 |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2022.931189/full |
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