Research
A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project
A paper describing the methodology and preliminary results of the first patient-driven registry for Italian subjects with Behçet's disease
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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.
The project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA. Quality of life, fatigue, the socioeconomic impact of the disease and therapeutic adherence are the core domains included in the registry.
Preliminary results from the registry are consistent with data available in the literature, confirming that PROs and PREs can be easily provided by the patient remotely to integrate physician-driven registries with complementary and reliable information.
The AIDA for patients pilot project represents the starting point of a broader initiative aimed at the development of four-handed registries for clinical research purposes in the National languages of all the Countries where AIDA Network partner centres operate