Research Agenda
• To create transition clinics for patients with these rare disorders and optimize treatment during this vulnerable period
• To evaluate best treatment options during pregnancy and their effect on the fetus and newborn
• To establish biobanks for biomarker studies to validate the markers that best correlate with disease activity and severity
• To evaluate the effect of vaccination in triggering or exacerbating disease activity in patients with IL-1 mediated SAIDs while on or off treatment with biologic DMARDs and/or glucocorticoids.
• To identify novel therapeutic targets and treatments
• To establish multicenter collaborative efforts to address:  ∘ Development of prospectively enrolling registries  ∘ Better characterization of phenotype-genotype correlations  ∘ Pathophysiology of organ damage in IL-1 mediated disorders  ∘ Validation of remission criteria for each disease, including patient-reported outcome measures  ∘ Development of minimal disease activity criteria, response criteria  ∘ Understanding of additional factors (epigenetics, environment) defining the disease course
• Continuation of: defining long-term outcomes, assessing long-term safety of biologics in IL-1 mediated disorders, updating and refining disease-specific outcome instruments for measuring disease activity and severity