We warmly welcome you to the AutoInflammatory Disease Alliance project!
Our mission is to create a sound and broad international Network of researchers, clinicians, patients and families sharing their knowledge and experience on monogenic and multifactorial autoinflammatory diseases.
Autoinflammatory diseases (AID) are innate immune system disorders characterized by sterile inflammation, as a consequence of the deregulation of an expanding spectrum of molecular pathways. Since the first historical hereditary periodic fevers were characterized, the remarkable progress of molecular techniques has deepened our knowledge of the mechanisms involved in innate immunity regulation; moreover, the extensive use of next-generation sequencing technology has led to the identification of new putative genes and to the definition of ever new nosological entities. At the same time, several immunologic disorders have been recently reclassified as polygenic or multifactorial AID on the basis of shared pathogenic and clinical features with hereditary periodic fevers. This paved the way to new treatment targets for patients suffering from rare diseases of unknown origin, including Behçet’s disease, adult onset Still’s disease, systemic onset juvenile idiopathic arthritis, Schnitzler’s disease, PFAPA (periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis) syndrome, chronic recurrent multifocal osteomyelitis, non-infectious uveitis and scleritis. Collecting data on AID is made difficult by the limited number of patients, the fragmentation of research experiences, along with the big deal of obtaining an accurate diagnosis in non-specialized clinical settings.
In this context lies the AIDA project, meeting the need of an international infrastructure enabling reference centers, pediatric and adult non-specialized services and, not least, the patient to communicate effectively, sharing and integrating clinical data from different perspectives. The AIDA platform already hosts several international registries implemented on the interoperable REDCap web application, collecting demographic, genetic, clinical and therapeutic data about monogenic and multifactorial AID.
Nevertheless, the platform has been conceived not only as a collection of biomedical registries for research purpose, but also to provide high level specialized education in the field of AID. A full programme of web-based events and face-to-face initiatives is going to be set up by the AIDA Academy, in collaboration with a renowned international faculty.
The AIDA project gives special attention to patients affected by monogenic and multifactorial AID, and also to those who are suspected of having an autoinflammatory condition but still in search of a diagnosis. Their contribution is supported by patient associations such as AIFP, APMAR, SIMBA and ANMAR and is expected to be even more active in the very near future, thus check out the patient section for details.
The AIDA network already counts 38 Italian Centers and 12 international partners and is currently accepting new collaborations from all over the world, looking forward to a large-scale expansion. Your contribution is welcome! Please subscribe to the newsletter to keep updated on our initiatives or contact us if you are willing to join the Network.
We wish you all good work and our best regards,
The AIDA Team