Research
The reference paper for the AIDA Network Monogenic Autoinflammatory Diseases registry is now online
The methodological article describing the development, framework and current structure of the AIDA Network Monogenic Autoinflammatory Diseases registry is now available
Link to article DOI: 10.3389/fmed.2022.980679
The AIDA Network Monogenic Autoinflammatory Diseases registry has been running since June 2020. It hosts participants' demographic, clinical, genetic, therapeutic and socioeconomic data provided by more than 120 reference centers worldwide. All monogenic autoinflammatory diseases are covered by the registry, and the list will be updated whenever new nosological entities are described. The results generated by the registry will be exploited in the context of the AIDA program and in alignment with the research agenda set by the international societies working on autoinflammatory diseases. The registry will play a central role not only in generating knowledge but also in sharing goals and good clinical practices among participants and stakeholders. On this basis, it is expected to improve patient management and ultimately minimize the impact of this group of diseases on the healthcare system.