A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project
IntroductionThis paper describes the creation and preliminary results of a patient-driven registry for the collection of patient-reported outcomes (PROs) and patient-reported experiences (PREs) in Behçet’s disease (BD).MethodsThe project was coordinated by the University of Siena and the Italian pat...
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Frontiers Media S.A.
2023-06-01
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| Series: | Frontiers in Medicine |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2023.1188021/full |
| _version_ | 1797802354702024704 |
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| author | Carla Gaggiano Alessandra Del Bianco Jurgen Sota Stefano Gentileschi Piero Ruscitti Roberto Giacomelli Matteo Piga Francesca Crisafulli Sara Monti Giacomo Emmi Giacomo Emmi Amato De Paulis Amato De Paulis Antonio Vitale Maria Tarsia Valeria Caggiano Rossana Nuzzolese Veronica Parretti Claudia Fabiani Giuseppe Lopalco Armin Maier Marco Cattalini Donato Rigante Donato Rigante Marcello Govoni Francesca Li Gobbi Serena Guiducci Paola Parronchi Paola Parronchi Achille Marino Francesco Ciccia Maria Cristina Maggio Emma Aragona Elena Bartoloni Annamaria Iagnocco Ombretta Viapiana Gian Domenico Sebastiani Silvana Guerriero Antonella Insalaco Emanuela Del Giudice Giovanni Conti Patrizia Barone Alma Nunzia Olivieri Antonio Brucato Francesco Carubbi Paola Triggianese Angela Mauro Gian Marco Tosi Alex Fonollosa Henrique Ayres Mayrink Giardini Gaafar Ragab Gaafar Ragab Samar Tharwat Samar Tharwat José Hernández-Rodríguez Petros P. Sfikakis Katerina Laskari Anastasios Karamanakos Gerard Espinosa Farhad Shahram Haner Direskeneli Andrea Hinojosa-Azaola Daniela Opris-Belinski Ibrahim A. AlMaghlouth Ibrahim A. AlMaghlouth Gülen Hatemi Gülen Hatemi Mehmet Akif Eksin Fatos Önen Ewa Więsik-Szewczyk Nurullah Akkoç Abdurrahman Tufan Ali Şahin Şükran Erten Seza Ozen Ezgi Deniz Batu Bruno Frediani Alberto Balistreri Luca Cantarini |
| author_facet | Carla Gaggiano Alessandra Del Bianco Jurgen Sota Stefano Gentileschi Piero Ruscitti Roberto Giacomelli Matteo Piga Francesca Crisafulli Sara Monti Giacomo Emmi Giacomo Emmi Amato De Paulis Amato De Paulis Antonio Vitale Maria Tarsia Valeria Caggiano Rossana Nuzzolese Veronica Parretti Claudia Fabiani Giuseppe Lopalco Armin Maier Marco Cattalini Donato Rigante Donato Rigante Marcello Govoni Francesca Li Gobbi Serena Guiducci Paola Parronchi Paola Parronchi Achille Marino Francesco Ciccia Maria Cristina Maggio Emma Aragona Elena Bartoloni Annamaria Iagnocco Ombretta Viapiana Gian Domenico Sebastiani Silvana Guerriero Antonella Insalaco Emanuela Del Giudice Giovanni Conti Patrizia Barone Alma Nunzia Olivieri Antonio Brucato Francesco Carubbi Paola Triggianese Angela Mauro Gian Marco Tosi Alex Fonollosa Henrique Ayres Mayrink Giardini Gaafar Ragab Gaafar Ragab Samar Tharwat Samar Tharwat José Hernández-Rodríguez Petros P. Sfikakis Katerina Laskari Anastasios Karamanakos Gerard Espinosa Farhad Shahram Haner Direskeneli Andrea Hinojosa-Azaola Daniela Opris-Belinski Ibrahim A. AlMaghlouth Ibrahim A. AlMaghlouth Gülen Hatemi Gülen Hatemi Mehmet Akif Eksin Fatos Önen Ewa Więsik-Szewczyk Nurullah Akkoç Abdurrahman Tufan Ali Şahin Şükran Erten Seza Ozen Ezgi Deniz Batu Bruno Frediani Alberto Balistreri Luca Cantarini |
| author_sort | Carla Gaggiano |
| collection | DOAJ |
| description | IntroductionThis paper describes the creation and preliminary results of a patient-driven registry for the collection of patient-reported outcomes (PROs) and patient-reported experiences (PREs) in Behçet’s disease (BD).MethodsThe project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA (Associazione Italiana Sindrome e Malattia di Behçet), in the context of the AIDA (AutoInflammatory Diseases Alliance) Network programme. Quality of life, fatigue, socioeconomic impact of the disease and therapeutic adherence were selected as core domains to include in the registry.ResultsRespondents were reached via SIMBA communication channels in 167 cases (83.5%) and the AIDA Network affiliated clinical centers in 33 cases (16.5%). The median value of the Behçet’s Disease Quality of Life (BDQoL) score was 14 (IQR 11, range 0–30), indicating a medium quality of life, and the median Global Fatigue Index (GFI) was 38.7 (IQR 10.9, range 1–50), expressing a significant level of fatigue. The mean Beliefs about Medicines Questionnaire (BMQ) necessity-concern differential was 0.9 ± 1.1 (range – 1.8–4), showing that the registry participants prioritized necessity belief over concerns to a limited extent. As for the socioeconomic impact of BD, in 104 out of 187 cases (55.6%), patients had to pay from their own pocket for medical exams required to reach the diagnosis. The low family socioeconomic status (p < 0.001), the presence of any major organ involvement (p < 0.031), the presence of gastro-intestinal (p < 0.001), neurological (p = 0.012) and musculoskeletal (p = 0.022) symptoms, recurrent fever (p = 0.002), and headache (p < 0.001) were associated to a higher number of accesses to the healthcare system. Multiple linear regression showed that the BDQoL score could significantly predict the global socioeconomic impact of BD (F = 14.519, OR 1.162 [CI 0.557–1.766], p < 0.001).DiscussionPreliminary results from the AIDA for Patients BD registry were consistent with data available in the literature, confirming that PROs and PREs could be easily provided by the patient remotely to integrate physician-driven registries with complementary and reliable information. |
| first_indexed | 2024-03-13T05:05:28Z |
| format | Article |
| id | doaj.art-0f0492e23f7f4763bef8b6d70b288317 |
| institution | Directory Open Access Journal |
| issn | 2296-858X |
| language | English |
| last_indexed | 2024-03-13T05:05:28Z |
| publishDate | 2023-06-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj.art-0f0492e23f7f4763bef8b6d70b2883172023-06-16T14:22:34ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2023-06-011010.3389/fmed.2023.11880211188021A patient-driven registry on Behçet’s disease: the AIDA for patients pilot projectCarla Gaggiano0Alessandra Del Bianco1Jurgen Sota2Stefano Gentileschi3Piero Ruscitti4Roberto Giacomelli5Matteo Piga6Francesca Crisafulli7Sara Monti8Giacomo Emmi9Giacomo Emmi10Amato De Paulis11Amato De Paulis12Antonio Vitale13Maria Tarsia14Valeria Caggiano15Rossana Nuzzolese16Veronica Parretti17Claudia Fabiani18Giuseppe Lopalco19Armin Maier20Marco Cattalini21Donato Rigante22Donato Rigante23Marcello Govoni24Francesca Li Gobbi25Serena Guiducci26Paola Parronchi27Paola Parronchi28Achille Marino29Francesco Ciccia30Maria Cristina Maggio31Emma Aragona32Elena Bartoloni33Annamaria Iagnocco34Ombretta Viapiana35Gian Domenico Sebastiani36Silvana Guerriero37Antonella Insalaco38Emanuela Del Giudice39Giovanni Conti40Patrizia Barone41Alma Nunzia Olivieri42Antonio Brucato43Francesco Carubbi44Paola Triggianese45Angela Mauro46Gian Marco Tosi47Alex Fonollosa48Henrique Ayres Mayrink Giardini49Gaafar Ragab50Gaafar Ragab51Samar Tharwat52Samar Tharwat53José Hernández-Rodríguez54Petros P. Sfikakis55Katerina Laskari56Anastasios Karamanakos57Gerard Espinosa58Farhad Shahram59Haner Direskeneli60Andrea Hinojosa-Azaola61Daniela Opris-Belinski62Ibrahim A. AlMaghlouth63Ibrahim A. AlMaghlouth64Gülen Hatemi65Gülen Hatemi66Mehmet Akif Eksin67Fatos Önen68Ewa Więsik-Szewczyk69Nurullah Akkoç70Abdurrahman Tufan71Ali Şahin72Şükran Erten73Seza Ozen74Ezgi Deniz Batu75Bruno Frediani76Alberto Balistreri77Luca Cantarini78Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyS.I.M.B.A (Associazione Italiana Sindrome e Malattia di Behçet), Pontedera, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyRheumatology Unit, Department of Biotechnological & Applied Clinical Sciences, University of L’Aquila, L’Aquila, ItalyRheumatology and Immunology Unit, Department of Medicine, University of Rome “Campus Biomedico”, Rome, ItalyRheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, ItalyRheumatology and Clinical Immunology, Department of Clinical and Experimental Sciences, University of Brescia and Spedali Civili [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Brescia, ItalyDivision of Rheumatology, Fondazione IRCCS Policlinico San Matteo [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Pavia, ItalyDepartment of Experimental and Clinical Medicine, University of Florence, Florence, ItalyCentre for Inflammatory Diseases, Department of Medicine, Monash Medical Centre, Monash University, Clayton, VIC, Australia0Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy1Center for Basic and Clinical Immunology Research (CISI), WAO Center of Excellence, University of Naples Federico II, Naples, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy2Clinical Paediatrics, Department of Molecular Medicine and Development, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy3Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy4Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy5Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy6Pediatric Clinic, University of Brescia and Spedali Civili di Brescia [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Brescia, Italy7Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy8Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy9Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy0Rheumatology Unit, Hospital S. Giovanni di Dio, Azienda USL-Toscana Centro, Florence, ItalyDepartment of Experimental and Clinical Medicine, University of Florence, Florence, ItalyDepartment of Experimental and Clinical Medicine, University of Florence, Florence, Italy1Immunology and Cellular Therapies Unit, University Hospital Careggi, Florence, Italy2Unit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy3Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy4University Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (PROMISE) “G. D’Alessandro”, University of Palermo, Palermo, Italy5Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy6Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy7Academic Rheumatology Center, Dipartimento Scienze Cliniche e Biologiche, Università degli Studi di Torino, Turin, Italy8Rheumatology Unit, Department of Medicine, University of Verona, Verona, Italy9Rheumatology Unit, San Camillo – Forlanini Hospital, Rome, Italy0Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy1Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Rome, Italy2Pediatric and Neonatology Unit, Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Latina, Italy3Pediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy4Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy5Department of Woman, Child and of General and Specialized Surgery, University of Campania “Luigi Vanvitelli”, Naples, Italy6Department of Biomedical and Clinical Sciences, Fatebenefratelli Hospital, Università di Milano, Milan, Italy7Department of Life, Health & Environmental Sciences and Internal Medicine and Nephrology Unit, Department of Medicine, University of L’Aquila and ASL Avezzano-Sulmona-L’Aquila, San Salvatore Hospital, L’Aquila, Italy8Rheumatology, Allergology and Clinical Immunology, Department of System Medicine, University of Rome Tor Vergata, Rome, Italy9Pediatric Rheumatology Unit, Department of Childhood and Developmental Medicine, Fatebenefratelli-Sacco Hospital, Milan, Italy3Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy0Department of Ophthalmology, Biocruces Bizkaia Health Research Institute, Cruces University Hospital, University of the Basque Country, Barakaldo, Spain1Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil2Rheumatology and Clinical Immunology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt3Faculty of Medicine, New Giza University, Giza, Egypt4Rheumatology and Immunology Unit, Internal Medicine Department, Mansoura University, Mansoura, Egypt5Department of Internal Medicine, Faculty of Medicine, Horus University, New Damietta, Egypt6Department of Autoimmune Diseases, Institut d’Investigacions Biomèdiques August Pi I Sunyer (IDIBAPS), Hospital Clínic of Barcelona [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], University of Barcelona, Barcelona, Spain7Joint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece7Joint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece8Department of Rheumatology, Evangelismos General Hospital, Athens, Greece6Department of Autoimmune Diseases, Institut d’Investigacions Biomèdiques August Pi I Sunyer (IDIBAPS), Hospital Clínic of Barcelona [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], University of Barcelona, Barcelona, Spain9Behcet’s Disease Unit, Rheumatology Research Center, Shariati Hospital Tehran University of Medical Sciences, Tehran, Iran0Department of Internal Medicine, Division of Rheumatology, Marmara University, Faculty of Medicine, Istanbul, Turkey1Department of Immunology and Rheumatology, Instituto Nacional de Ciencias Médicas Y Nutrición Salvador Zubirán, Mexico City, Mexico2Rheumatology and Internal Medicine Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania3Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia4College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia5Department of Internal Medicine, Division of Rheumatology, Cerrahpasa Medical School, Istanbul University-Cerrahpasa, Istanbul, Turkey6Behçet’s Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey7Rheumatology Clinic, Ankara City Hospital, Ankara, Turkey8Department of Internal Medicine Division of Rheumatology, Dokuz Eylül University Faculty of Medicine, İzmir, Turkey9Department of Internal Medicine, Pneumonology, Allergology and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defense, Military Institute of Medicine, National Research Institute, Warsaw, Poland0Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey1Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine Gazi University, Ankara, Turkey2Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey7Rheumatology Clinic, Ankara City Hospital, Ankara, Turkey3Pediatric Rheumatology Unit, Department of Pediatrics, Hacettepe University School of Medicine, Ankara, Turkey3Pediatric Rheumatology Unit, Department of Pediatrics, Hacettepe University School of Medicine, Ankara, TurkeyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy4Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, ItalyRheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, ItalyIntroductionThis paper describes the creation and preliminary results of a patient-driven registry for the collection of patient-reported outcomes (PROs) and patient-reported experiences (PREs) in Behçet’s disease (BD).MethodsThe project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA (Associazione Italiana Sindrome e Malattia di Behçet), in the context of the AIDA (AutoInflammatory Diseases Alliance) Network programme. Quality of life, fatigue, socioeconomic impact of the disease and therapeutic adherence were selected as core domains to include in the registry.ResultsRespondents were reached via SIMBA communication channels in 167 cases (83.5%) and the AIDA Network affiliated clinical centers in 33 cases (16.5%). The median value of the Behçet’s Disease Quality of Life (BDQoL) score was 14 (IQR 11, range 0–30), indicating a medium quality of life, and the median Global Fatigue Index (GFI) was 38.7 (IQR 10.9, range 1–50), expressing a significant level of fatigue. The mean Beliefs about Medicines Questionnaire (BMQ) necessity-concern differential was 0.9 ± 1.1 (range – 1.8–4), showing that the registry participants prioritized necessity belief over concerns to a limited extent. As for the socioeconomic impact of BD, in 104 out of 187 cases (55.6%), patients had to pay from their own pocket for medical exams required to reach the diagnosis. The low family socioeconomic status (p < 0.001), the presence of any major organ involvement (p < 0.031), the presence of gastro-intestinal (p < 0.001), neurological (p = 0.012) and musculoskeletal (p = 0.022) symptoms, recurrent fever (p = 0.002), and headache (p < 0.001) were associated to a higher number of accesses to the healthcare system. Multiple linear regression showed that the BDQoL score could significantly predict the global socioeconomic impact of BD (F = 14.519, OR 1.162 [CI 0.557–1.766], p < 0.001).DiscussionPreliminary results from the AIDA for Patients BD registry were consistent with data available in the literature, confirming that PROs and PREs could be easily provided by the patient remotely to integrate physician-driven registries with complementary and reliable information.https://www.frontiersin.org/articles/10.3389/fmed.2023.1188021/fullBehçet’s diseasepatient-driven registriesrare diseasesautoinflammatory diseasespatient involvementpatient-reported outcomes |
| spellingShingle | Carla Gaggiano Alessandra Del Bianco Jurgen Sota Stefano Gentileschi Piero Ruscitti Roberto Giacomelli Matteo Piga Francesca Crisafulli Sara Monti Giacomo Emmi Giacomo Emmi Amato De Paulis Amato De Paulis Antonio Vitale Maria Tarsia Valeria Caggiano Rossana Nuzzolese Veronica Parretti Claudia Fabiani Giuseppe Lopalco Armin Maier Marco Cattalini Donato Rigante Donato Rigante Marcello Govoni Francesca Li Gobbi Serena Guiducci Paola Parronchi Paola Parronchi Achille Marino Francesco Ciccia Maria Cristina Maggio Emma Aragona Elena Bartoloni Annamaria Iagnocco Ombretta Viapiana Gian Domenico Sebastiani Silvana Guerriero Antonella Insalaco Emanuela Del Giudice Giovanni Conti Patrizia Barone Alma Nunzia Olivieri Antonio Brucato Francesco Carubbi Paola Triggianese Angela Mauro Gian Marco Tosi Alex Fonollosa Henrique Ayres Mayrink Giardini Gaafar Ragab Gaafar Ragab Samar Tharwat Samar Tharwat José Hernández-Rodríguez Petros P. Sfikakis Katerina Laskari Anastasios Karamanakos Gerard Espinosa Farhad Shahram Haner Direskeneli Andrea Hinojosa-Azaola Daniela Opris-Belinski Ibrahim A. AlMaghlouth Ibrahim A. AlMaghlouth Gülen Hatemi Gülen Hatemi Mehmet Akif Eksin Fatos Önen Ewa Więsik-Szewczyk Nurullah Akkoç Abdurrahman Tufan Ali Şahin Şükran Erten Seza Ozen Ezgi Deniz Batu Bruno Frediani Alberto Balistreri Luca Cantarini A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project Frontiers in Medicine Behçet’s disease patient-driven registries rare diseases autoinflammatory diseases patient involvement patient-reported outcomes |
| title | A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project |
| title_full | A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project |
| title_fullStr | A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project |
| title_full_unstemmed | A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project |
| title_short | A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project |
| title_sort | patient driven registry on behcet s disease the aida for patients pilot project |
| topic | Behçet’s disease patient-driven registries rare diseases autoinflammatory diseases patient involvement patient-reported outcomes |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2023.1188021/full |
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