Development and implementation of the AIDA international registry for patients with Behçet’s disease

Objective: the purpose of the present work is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) international Registry specifically dedicated to patients with Behçet’s disease (BD). Methods: the rationale for the Registry, the methodology employed, and the report about its implementation are provided. Results: as for other rare clinical conditions, the reduced epidemiological burden of BD makes it difficult to enroll large numbers of patients in clinical studies. This issue leads to the lack of solid and reliable knowledge about the natural history of the disease with consequent delay in diagnosis and little evidence of long-term outcome and prognosis in the light of the most recent treatment approaches. These shortcomings are even more significant for BD because of the different geographical expressions of the disease and the need for tapering clinical and therapeutic management on the basis of the specific type of organ involvement. For these reasons, the AIDA Network has developed an international Registry for BD with the aim of bridging together a worldwide group of physicians and researchers interested at sharing knowledge, experience, information and different perceptions on the clinical, therapeutic and research approach for BD patients. Conclusions: the development of the AIDA international Registry for patients with BD will facilitate the collection of standardised data, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately implementation and optimisation of scientific efforts