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Development and Implementation of the Aida International Registry for Patients With Behcet’S Disease Publisher Pubmed



Vitale A1 ; Della Casa F2 ; Ragab G3, 4 ; Almaghlouth IA5, 6 ; Lopalco G7 ; Pereira RM8 ; Guerriero S9 ; Govoni M10 ; Sfikakis PP11 ; Giacomelli R12 ; Ciccia F13 ; Monti S14 ; Ruscitti P15 ; Piga M16 Show All Authors
Authors
  1. Vitale A1
  2. Della Casa F2
  3. Ragab G3, 4
  4. Almaghlouth IA5, 6
  5. Lopalco G7
  6. Pereira RM8
  7. Guerriero S9
  8. Govoni M10
  9. Sfikakis PP11
  10. Giacomelli R12
  11. Ciccia F13
  12. Monti S14
  13. Ruscitti P15
  14. Piga M16
  15. Lomater C17
  16. Tufan A18
  17. Oprisbelinski D19
  18. Emmi G20
  19. Hernandezrodriguez J21
  20. Sahin A22
  21. Sebastiani GD23
  22. Bartoloni E24
  23. Akkoc N25
  24. Gunduz OS25
  25. Cattalini M26
  26. Conti G27
  27. Hatemi G28
  28. Maier A29
  29. Parronchi P20
  30. Del Giudice E30
  31. Erten S31
  32. Insalaco A32
  33. Li Gobbi F33
  34. Maggio MC34
  35. Shahram F35
  36. Caggiano V1
  37. Hegazy MT3, 4
  38. Asfina KN6
  39. Morrone M7
  40. Prado LL8
  41. Dammacco R9
  42. Ruffilli F10
  43. Arida A11
  44. Navarini L12
  45. Pantano I13
  46. Cavagna L14
  47. Conforti A15
  48. Cauli A16
  49. Marucco EM17
  50. Kucuk H18
  51. Ionescu R19
  52. Mattioli I20
  53. Espinosa G21
  54. Araujo O21
  55. Karkas B22
  56. Canofari C23
  57. Sota J1
  58. Laymouna AH3
  59. Bedaiwi AA5
  60. Colella S7
  61. Giardini HAM8
  62. Albano V9
  63. Lo Monaco A10
  64. Fragoulis GE11
  65. Kardas RC18
  66. Berlengiero V1
  67. Hussein MA3
  68. Ricci F26
  69. La Torre F36
  70. Rigante D37, 38
  71. Wiesikszewczyk E39
  72. Frassi M40
  73. Gentileschi S41
  74. Tosi GM42
  75. Dagostin MA8
  76. Mahmoud AAMA3
  77. Tarsia M1
  78. Alessio G9
  79. Cimaz R43
  80. Giani T43
  81. Gaggiano C1
  82. Iannone F7
  83. Cipriani P15
  84. Mourabi M1
  85. Spedicato V7
  86. Barneschi S1
  87. Aragona E44
  88. Balistreri A45
  89. Frediani B41
  90. Fabiani C42
  91. Cantarini L1
Show Affiliations
Authors Affiliations
  1. 1. Rheumatology Unit, Policlinico “Le Scotte�, Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behcet’s Disease Clinic, University of Siena, viale Bracci 16, Siena, 53100, Italy
  2. 2. Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
  3. 3. Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt
  4. 4. Faculty of Medicine, Newgiza University (NGU), Giza, Egypt
  5. 5. Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  6. 6. College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  7. 7. Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
  8. 8. Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil
  9. 9. Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy
  10. 10. Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy
  11. 11. Joint Academic Rheumatology Program, 1st Department of Propedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece
  12. 12. Rheumatology, Immunology and Clinical Medicine Unit, Department of Medicine, Universita Campus Bio-Medico di Roma, Rome, Italy
  13. 13. Department of Precision Medicine, Universita Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy
  14. 14. Rheumatology Department, IRCCS Policlinico S. Matteo Fondazione, University of Pavia, Pavia, Italy
  15. 15. Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L’Aquila, L’Aquila, Italy
  16. 16. Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy
  17. 17. AO Mauriziano, Universita degli Studi di Torino, Academic Rheumatology Centre, Turin, Italy
  18. 18. Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey
  19. 19. Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
  20. 20. Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
  21. 21. Vasculitis Research Unit and Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain
  22. 22. Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey
  23. 23. U.O.C. Reumatologia, Ospedale San Camillo-Forlanini, Rome, Italy
  24. 24. Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy
  25. 25. Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey
  26. 26. Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
  27. 27. Pediatric Nephrology Unit, AOU Policlinic “G Martino�, University of Messina, Messina, Italy
  28. 28. Division of Rheumatology, Department of Internal Medicine and Behcet’s Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey
  29. 29. Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy
  30. 30. Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Rome, Italy
  31. 31. Department of Rheumatology, Ankara City Hospital, Ankara, Turkey
  32. 32. Division of Rheumatology, Ospedale Pediatrico Bambino Gesu, IRCCS (ERN-RITA Center), Rome, Italy
  33. 33. Rheumatology Unit, San Giovanni di Dio Hospital, Florence, Italy
  34. 34. University Department Pro.Sa.M.I. “G. D’Alessandro�, University of Palermo, Palermo, Italy
  35. 35. Behcet’s Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
  36. 36. Department of Pediatrics, Ospedale “Giovanni XXIII�, Pediatric Rheumatology Center, AOU Consorziale Policlinico, Bari, Italy
  37. 37. Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
  38. 38. Rare Diseases and Periodic Fevers Research Centre, Universita Cattolica del Sacro Cuore, Rome, Italy
  39. 39. Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
  40. 40. Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
  41. 41. Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
  42. 42. Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
  43. 43. ASST G. Pini-CTO, Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy
  44. 44. Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
  45. 45. Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy

Source: Internal and Emergency Medicine Published:2022


Abstract

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 Behcet’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).
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