AIDA for Patients
The AIDA project gives special attention to patients affected by monogenic and multifactorial autoinflammatory diseases, 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. Strengthening the community awareness about these clinical conditions, building up patients’ empowerment, reinforcing the therapeutic alliance between the patient and the physician, creating opportunities for social aggregation and cohesion, are only few of the goals that AIDA shares with patient associations.
Patient-friendly sections designed to collect patient reported outcome measures and to calculate disease activity indexes, automatically merging these data with the registries, are under construction. In addition, patients and the reference physicians will share a private interface, easily accessible through mobile devices, which includes a series of functions related to the monitoring of compliance to treatment, safety issues, automatic visit/exams/injections reminders and other interactive instruments supporting the therapeutic engagement. The project of the implementation of the section AIDA for patients has been submitted to the ERA PerMed Joint Transnational Call 2020 “Multidisciplinary Research Projects on Personalised Medicine – Pre-/Clinical research, Big Data and ICT, Implementation and User’s Perspective” to apply for ERA-Net cofunding, and has already passed the first evaluation stage, looking forward to the final steps of the selection.