Abstract
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.
Highlights
Autoinflammatory diseases (AID) are rare disorders characterized by recurrent episodes of systemic and organspecific inflammation
Studying AID has been limited by the difficulty in finding and enrolling large numbers of patients with these rare illnesses
Authors’ details 1Boston Children’s Hospital, Rheumatology, Boston, MA, USA
Summary
Autoinflammatory diseases (AID) are rare disorders characterized by recurrent episodes of systemic and organspecific 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
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