Project Title: “Patient and Physician Discordance of Global Disease Assessment in Juvenile Dermatomyositis: Findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry”
Project Title: “Establishing the CARRA Registry Research Network for SJIA-LD (CARE-NETS)”
Lay Summary: Over the past decade, children with systemic juvenile idiopathic arthritis have increasingly been found to have a life-threatening lung disease (SJIA-LD). However, the causes and best treatments for this deadly complication are unknown. This project will create a multicenter network focused on understanding this disorder, called the CARRA Registry Research Network for SJIA-LD (CARE-NETS). CARE-NETS will identify a cohort of at least 40 children with SJIA-LD for enrollment in the CARRA Registry. We will develop short data forms to collect clinical information on lung disease, and collect biosamples over time. Finally, we will use these biosamples to perform immune cell phenotyping studies on SJIA-LD patients. Together, this pilot study will launch the first research network that will collect clinical data and serial biosamples from children with SJIA-LD through the CARRA Registry. CARE-NETS is an essential first step to further focused research through CARRA to find the cause of SJIA-LD.
Project Title: “Feasibility of conducting transcriptomic analyses in B cell subsets of pediatric lupus patients”
Lay Summary: Systemic lupus erythematosus is a chronic, multi-organ, autoimmune disease that typically affects young women of child-bearing age, and can be more severe and debilitating when diagnosed in childhood. To date, it is difficult to diagnose early in disease course and its treatment can be difficult, without good measures of response to therapy. To date, our group has demonstrated differences in the function of the genomes of children with lupus compared to healthy children. We propose to investigate how these differences affect the genes expressed in lupus patients that are not expressed in healthy children. Having this information will provide us with clues to how disease develops and how individual patients may respond to treatment.
Project Title: “Pilot Study for the Implementation of the CARRA Uveitis CTPs”
Lay Summary: Uveitis is a frequent complication of juvenile idiopathic arthritis (JIA) and can lead to permanent visual impairment. There is currently no standard approach to the treatment of uveitis. Recently, the CARRA uveitis subcommittee developed consensus treatment plans (CTPs) for two different scenarios in the treatment of JIA-associated uveitis. As with other CTPs, the intention of these plans, which each offer multiple options for therapy, is to streamline care in a way that allows for efficient collection of data using the CARRA registry. The ultimate goal is to be able to compare outcomes between treatment arms for both plans. We propose here a pilot study of the implementation of these CTPs at 9 CARRA sites to better understand the practical aspects of patient enrollment and data collection.