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. 2022 Apr 7;9:878797. doi: 10.3389/fmed.2022.878797

Table 1.

List of the objectives that have driven the implementation of the AIDA Registry for patients with Still's disease.

Primary objectives To gather as much data as possible from a large cohort of patients enrolled on an international basis
To obtain real-world experience applicable to all geographic contexts
To identify prognostic factors capable of tapering patients' management and treatment in the light of a personalized medicine approach
Additional objectives Regarding diagnosis To highlight disease differences in the severity and modalities of presentation of the disease according to the geographical context
To assess the reproducibility (sensitivity/specificity) of the different classification/diagnostic criteria currently used for sJIA and AOSD
To cluster disease features in order to identify subgroups of patients with different prognosis or requiring different treatment strategies
Regarding prognosis To look for any impact of diagnostic delay on disease prognosis
To identify any possible predisposing factor and trigger inducing disease exacerbations
To better characterize the behavior of the disease during pregnancy and postpartum period
To monitor the cardiovascular risk, adjusting for treatments employed
To identify clinical and biological factors predisposing to MAS development, which is the most frequent life-threatening complication of Still's disease
To assess whether and how disease course has changed due to the current diagnostic and therapeutic evolution
Regarding therapy To define a treat-to-target strategy regarding how to use corticosteroids, conventional immunosuppressants and biotechnologic agents in the earliest phase of the disease
To evaluate the best timing to start biotechnologic treatment
To assess starting posologies and posologies adjustments
To look for evidence on the tapering and withdrawal of treatment strategies
To assess the socioeconomic impact of the disease before and after treatment
To explore the therapeutic options and results about the pharmacological agents used in this severe condition
To identify different diagnostic strategies fitting with regional areas and evaluating the treatment response according to the resources available worldwide
To describe old and new therapeutic regimens, specifically focusing on their global efficacy and role on the different features of the disease
Ancillary objectives To quickly find patients to be potentially included in randomized controlled trials
To think about retrospective and prospective studies capable of answering future unmet needs

Primary objectives have been distinguished from additional objectives: the former represents the general purposes at the basis of the Registry development, while the latter consist of the main lines of research the AIDA Network will follow in next years.