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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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Principais autores: Carla Gaggiano, Alessandra Del Bianco, Jurgen Sota, Stefano Gentileschi, Piero Ruscitti, Roberto Giacomelli, Matteo Piga, Francesca Crisafulli, Sara Monti, Giacomo Emmi, Amato De Paulis, Antonio Vitale, Maria Tarsia, Valeria Caggiano, Rossana Nuzzolese, Veronica Parretti, Claudia Fabiani, Giuseppe Lopalco, Armin Maier, Marco Cattalini, Donato Rigante, Marcello Govoni, Francesca Li Gobbi, Serena Guiducci, 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, 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, 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
Formato: Artigo
Idioma:Inglês
Publicado em: Frontiers Media S.A. 2023-06-01
coleção:Frontiers in Medicine
Assuntos:
Behçet’s disease
patient-driven registries
rare diseases
autoinflammatory diseases
patient involvement
patient-reported outcomes
Acesso em linha:https://www.frontiersin.org/articles/10.3389/fmed.2023.1188021/full
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