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

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

Frontiers in Medicine（2023）

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摘要

Preliminary 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.

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关键词

Behçet’s disease,patient-driven registries,rare diseases,autoinflammatory diseases,patient involvement,patient-reported outcomes

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