CARRA Registry Research Network for SJIA-LD (CARE-NETS) Study

Disease Area:
Juvenile Idiopathic Arthritis (JIA)

Biosample Status:
Biosample Available

About the CARE-NETS Study

Over the past decade, children with systemic JIA (sJIA) have increasingly been found to have a life-threatening lung disease. Still, the causes and best treatments for this deadly complication are unknown. This lung disease is known as sJIA-LD. In general, children suffering from SJIA-LD have uncontrolled inflammation in their lungs making it harder to move air in and out of their lungs to provide enough oxygen in their bloodstream.

Researchers at Cincinnati Children’s Hospital, with help from CARRA, are working on a project called the “CARRA Registry Research Network for SJIA-LD” (CARE-NETS) that will allow sJIA-LD data to be collected at several hospitals in the US and Canada to understand this disease better.

Researchers want to learn:

• How lung disease develops and progresses over time in children with SJIA
• Biomarker patterns among sJIA-LD kids, using blood samples

Even though the number of sJIA-LD children is increasing, it is still a rare complication. Researchers and doctors need to rely on information from the entire patient group to identify trends and help determine which medications are most appropriate for individual patients. This project will launch the first research network to collect clinical data and blood samples from children with sJIA-LD through the CARRA Registry. CARE-NETS is an essential first step to finding the cause of sJIA-LD, which will be done using the CARRA network.

Study Updates and Findings

• More than 24 participants across 12 CARRA Registry sites have been enrolled so far, as of May 2022.
• Almost 2 years is the amount of time that participants had sJIA before developing lung disease.
• Tachypnea, clubbing, cough and finger and toe erythema are the most common features.
• Read more from the latest 2022 ACR abstract: Baseline Clinical and Laboratory Features of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Systemic Juvenile Idiopathic Arthritis-Associated Lung Disease (SJIA-LD) Cohort

About the Participants

• Children with sJIA. Children must be diagnosed with sJIA by their physician and with any disease duration. Children can be existing or new CARRA Registry participants.
• Lung disease related to sJIA may be suspected, probable or definite, as defined by the study team.

About the Study Team

This study is funded through a CARRA-Arthritis Foundation Large Grant. Additional support is provided in part by the Systemic JIA Foundation.

Lead researchers (*Principal Investigator):

• Grant Schulert*, MD, PhD, Cincinnati Children’s Hospital Medical Center
• Yukiko Kimura, MD, Hackensack

To learn more about this project, please contact [email protected].