Studying patients with autoinflammatory diseases: the past, present, and a perspective for the future

Autoinflammatory diseases (AID) are rare disorders characterized by recurrent episodes of systemic and organ-specific inflammation. Studying AID has been limited by the difficulty in finding and enrolling large numbers of patients with these rare illnesses. We used a traditional retrospective chart review to describe patients with AID at a single academic medical center, and compared the results with those of participants within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry, a multicenter observational pediatric rheumatic disease registry in North America. We discuss the benefits and limitations of these types of studies, and suggest new ways to conduct future research.