Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome

Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome Publisher

Della Casa F¹ ; Vitale A² ; Cattalini M³ ; La Torre F⁴ ; Capozio G^{5, 6} ; Del Giudice E⁷ ; Maggio MC⁸ ; Conti G⁹ ; Alessio M¹⁰ ; Ogunjimi B^{11, 12, 13, 14} ; Ragab G^{15, 16} ; Emmi G¹⁷ ; Aragona E¹⁸ ; Giani T¹⁹ Show All Authors

Della Casa F¹
Vitale A²
Cattalini M³
La Torre F⁴
Capozio G^{5, 6}
Del Giudice E⁷
Maggio MC⁸
Conti G⁹
Alessio M¹⁰
Ogunjimi B^{11, 12, 13, 14}
Ragab G^{15, 16}
Emmi G¹⁷
Aragona E¹⁸
Giani T¹⁹
Lopalco G²⁰
Parronchi P¹⁷
Shahram F²¹
Verrecchia E^{22, 23}
Ricci F³
Cardinale F⁴
Di Noi S⁵
Nuzzolese R²
Lubrano R⁷
Patroniti S⁹
Naddei R¹⁰
Sabato V²⁴
Hussein MA¹⁵
Dotta L³
Mastrorilli V⁴
Gentileschi S²⁵
Tufan A²⁶
Caggiano V²
Hegazy MT^{15, 16}
Sota J²
Almaghlouth IA^{27, 28}
Ibrahim A²⁹
Wiesikszewczyk E³⁰
Ozkiziltas B²⁶
Grosso S³¹
Frassi M³²
Tarsia M²
Pereira RMR³³
Taymour M³⁴
Gaggiano C²
Colella S²⁰
Fabiani C³⁵
Morrone M²⁰
Ruscitti P³⁶
Frediani B²⁵
Spedicato V²⁰
Giardini HAM³³
Balistreri A³⁷
Rigante D^{5, 23}
Cantarini L²

Show Affiliations

1. Section of Clinical Immunology, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
2. Research Center of Systemic Autoinflammatory Diseases and Behcet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy
3. Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
4. Pediatric Rheumatology Center, Department of Pediatrics, Ospedale â€œGiovanni XXIIIâ€�, AOU Consorziale Policlinico, Bari, Italy
5. Department of Life Sciences and Public Health, Fondazione Policlinico Universitario A, Gemelli IRCCS, Rome, Italy
6. Meyer Children's University Hospital, Florence, Italy
7. Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Polo Pontino, Italy
8. University Department Pro.Sa.M.I. â€œG. D'Alessandroâ€�, University of Palermo, Palermo, Italy
9. Pediatric Nephrology and Rheumatology Unit, AOU G Martino, Messina, Italy
10. Pediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
11. AUDACIS, Antwerp Unit for Data Analysis and Computation in Immunology and Sequencing, University of Antwerp, Antwerp, Belgium
12. Antwerp Center for Translational Immunology and Virology (ACTIV), Vaccine and Infectious Disease Institute, University of Antwerp, Antwerp, Belgium
13. Department of Paediatrics, Antwerp University Hospital, Antwerp, Belgium
14. Center for Health Economics Research and Modeling Infectious Diseases (CHERMID), Vaccine and Infectious Disease Institute, University of Antwerp, Antwerp, Belgium
15. Rheumatology and Clinical Immunology Unit, Internal Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt
16. Faculty of Medicine, Newgiza University (NGU), Giza, Egypt
17. Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
18. Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
19. Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy
20. Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
21. Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
22. Department of Aging, Neurological, Orthopedic, and Head and Neck Sciences, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy
23. Rare Diseases and Periodic Fevers Research Centre, Universita Cattolica Sacro Cuore, Rome, Italy
24. Immunology Allergology Rheumatology University of Antwerp and Antwerp University Hospital, Antwerp, Belgium
25. Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
26. Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Gazi University, Ankara, Turkey
27. Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
28. College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
29. International Organization for Migration, Cairo, Egypt
30. Department of Internal Medicine, Pulmonology, Allergy, and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
31. Clinical Paediatrics, Department of Molecular Medicine and Development, University of Siena, Siena, Italy
32. Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
33. Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, Brazil
34. Ministry of Health, Al Mounira Hospital, Cairo, Egypt
35. Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
36. Rheumatology Unit, Department of Biotechnological Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
37. Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy

Source: Frontiers in Pediatrics Published:2022

Abstract

Objective: Aim of this paper is to illustrate the methodology, design, and development of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to patients with the Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) syndrome. Methods: This is a physician-driven, non-population- and electronic-based registry proposed to gather real-world demographics, clinical, laboratory, instrumental and socioeconomic data from PFAPA patients. Data recruitment is realized through the on-line Research Electronic Data Capture (REDCap) tool. This registry is thought to collect standardized information for clinical research leading to solid real-life evidence. The international scope and the flexibility of the registry will facilitate the realization of cutting-edge study projects through the constant updating of variables and the possible merging and transfer of data between current and future PFAPA registries. Results: A total of 112 centers have already been involved from 23 countries and 4 continents starting from August 24th, 2021, to April 6th, 2022. In total 56/112 have already obtained the formal approval from their local Ethics Committees. The platform counts 321 users (113 principal investigators, 203 site investigators, two lead investigators, and three data managers). The registry collects retrospective and prospective data using 3,856 fields organized into 25 instruments, including PFAPA patient's demographics, medical histories, symptoms, triggers/risk factors, therapies, and impact on the healthcare systems. Conclusions: The development of the AIDA International Registry for PFAPA patients will enable the on-line collection of standardized data prompting real-life studies through the connection of worldwide groups of physicians and researchers. This project can be found on https://clinicaltrials.gov NCT 05200715. Copyright © 2022 Della Casa, Vitale, Cattalini, La Torre, Capozio, Del Giudice, Maggio, Conti, Alessio, Ogunjimi, Ragab, Emmi, Aragona, Giani, Lopalco, Parronchi, Shahram, Verrecchia, Ricci, Cardinale, Di Noi, Nuzzolese, Lubrano, Patroniti, Naddei, Sabato, Hussein, Dotta, Mastrorilli, Gentileschi, Tufan, Caggiano, Hegazy, Sota, Almaghlouth, Ibrahim, Wiesik-Szewczyk, Ozkiziltas, Grosso, Frassi, Tarsia, Pereira, Taymour, Gaggiano, Colella, Fabiani, Morrone, Ruscitti, Frediani, Spedicato, Giardini, Balistreri, Rigante and Cantarini.

2. The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases, Frontiers in Medicine (2022)

3. Colchicine Versus Cimetidine: The Better Choice for Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis (Pfapa) Syndrome Prophylaxis, and the Role of Mefv Gene Mutations, Pediatric Rheumatology (2022)

4. Pfapa (Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Adenitis) Syndrome: An Overview of Genetic Background, Clinical Rheumatology (2021)

5. Rheumatologic Manifestations of Autoinflammatory Diseases, Translational Autoimmunity: Volume 6: Advances in Autoimmune Rheumatic Diseases (2023)

6. Development and Implementation of the Aida International Registry for Patients With Behcet’S Disease, Internal and Emergency Medicine (2022)

7. Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome, Frontiers in Medicine (2022)

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Style	Citing Format
MLA	Della Casa F, et al.. "Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome." Frontiers in Pediatrics, vol. 10, no. , 2022, pp. -.
APA	Della Casa F, Vitale A, Cattalini M, La Torre F, Capozio G, Del Giudice E, Maggio MC, Conti G, Alessio M, Ogunjimi B, Ragab G, Emmi G, Aragona E, Giani T, Lopalco G, Parronchi P, Shahram F, Verrecchia E, Ricci F, ... Cantarini L (2022). Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome. Frontiers in Pediatrics, 10(), -.
Chicago	Della Casa F, Vitale A, Cattalini M, La Torre F, Capozio G, Del Giudice E, Maggio MC, et al.. "Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome." Frontiers in Pediatrics 10, no. (2022): -.
Harvard	Della Casa F et al. (2022) 'Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome', Frontiers in Pediatrics, 10(), pp. -.
Vancouver	Della Casa F, Vitale A, Cattalini M, La Torre F, Capozio G, Del Giudice E, et al.. Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome. Frontiers in Pediatrics. 2022;10():-.
BibTex	@article{ author = {Della Casa F and Vitale A and Cattalini M and La Torre F and Capozio G and Del Giudice E and Maggio MC and Conti G and Alessio M and Ogunjimi B and Ragab G and Emmi G and Aragona E and Giani T and Lopalco G and Parronchi P and Shahram F and Verrecchia E and Ricci F and Cardinale F and Di Noi S and Nuzzolese R and Lubrano R and Patroniti S and Naddei R and Sabato V and Hussein MA and Dotta L and Mastrorilli V and Gentileschi S and Tufan A and Caggiano V and Hegazy MT and Sota J and Almaghlouth IA and Ibrahim A and Wiesikszewczyk E and Ozkiziltas B and Grosso S and Frassi M and Tarsia M and Pereira RMR and Taymour M and Gaggiano C and Colella S and Fabiani C and Morrone M and Ruscitti P and Frediani B and Spedicato V and Giardini HAM and Balistreri A and Rigante D and Cantarini L}, title = {Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome}, journal = {Frontiers in Pediatrics}, volume = {10}, number = {}, pages = {-}, year = {2022} }
RIS	TY - JOUR AU - Della Casa F AU - Vitale A AU - Cattalini M AU - La Torre F AU - Capozio G AU - Del Giudice E AU - Maggio MC AU - Conti G AU - Alessio M AU - Ogunjimi B AU - Ragab G AU - Emmi G AU - Aragona E AU - Giani T AU - Lopalco G AU - Parronchi P AU - Shahram F AU - Verrecchia E AU - Ricci F AU - Cardinale F AU - Di Noi S AU - Nuzzolese R AU - Lubrano R AU - Patroniti S AU - Naddei R AU - Sabato V AU - Hussein MA AU - Dotta L AU - Mastrorilli V AU - Gentileschi S AU - Tufan A AU - Caggiano V AU - Hegazy MT AU - Sota J AU - Almaghlouth IA AU - Ibrahim A AU - Wiesikszewczyk E AU - Ozkiziltas B AU - Grosso S AU - Frassi M AU - Tarsia M AU - Pereira RMR AU - Taymour M AU - Gaggiano C AU - Colella S AU - Fabiani C AU - Morrone M AU - Ruscitti P AU - Frediani B AU - Spedicato V AU - Giardini HAM AU - Balistreri A AU - Rigante D AU - Cantarini L TI - Development and Implementation of the Aida International Registry for Patients With Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis Syndrome JO - Frontiers in Pediatrics VL - 10 IS - SP - EP - PY - 2022 ER -

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