A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project

INTRODUCTION: This 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). METHODS: The project was coordinated by the University of Siena and the Italia...

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Detalles Bibliográficos
Autores principales: Gaggiano, Carla, Del Bianco, Alessandra, Sota, Jurgen, Gentileschi, Stefano, Ruscitti, Piero, Giacomelli, Roberto, Piga, Matteo, Crisafulli, Francesca, Monti, Sara, Emmi, Giacomo, De Paulis, Amato, Vitale, Antonio, Tarsia, Maria, Caggiano, Valeria, Nuzzolese, Rossana, Parretti, Veronica, Fabiani, Claudia, Lopalco, Giuseppe, Maier, Armin, Cattalini, Marco, Rigante, Donato, Govoni, Marcello, Li Gobbi, Francesca, Guiducci, Serena, Parronchi, Paola, Marino, Achille, Ciccia, Francesco, Maggio, Maria Cristina, Aragona, Emma, Bartoloni, Elena, Iagnocco, Annamaria, Viapiana, Ombretta, Sebastiani, Gian Domenico, Guerriero, Silvana, Insalaco, Antonella, Del Giudice, Emanuela, Conti, Giovanni, Barone, Patrizia, Olivieri, Alma Nunzia, Brucato, Antonio, Carubbi, Francesco, Triggianese, Paola, Mauro, Angela, Tosi, Gian Marco, Fonollosa, Alex, Giardini, Henrique Ayres Mayrink, Ragab, Gaafar, Tharwat, Samar, Hernández-Rodríguez, José, Sfikakis, Petros P., Laskari, Katerina, Karamanakos, Anastasios, Espinosa, Gerard, Shahram, Farhad, Direskeneli, Haner, Hinojosa-Azaola, Andrea, Opris-Belinski, Daniela, AlMaghlouth, Ibrahim A., Hatemi, Gülen, Eksin, Mehmet Akif, Önen, Fatos, Więsik-Szewczyk, Ewa, Akkoç, Nurullah, Tufan, Abdurrahman, Şahin, Ali, Erten, Şükran, Ozen, Seza, Batu, Ezgi Deniz, Frediani, Bruno, Balistreri, Alberto, Cantarini, Luca
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Medicine
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10313381/
https://www.ncbi.nlm.nih.gov/pubmed/37396916
http://dx.doi.org/10.3389/fmed.2023.1188021

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