Research

This is a list of research studies that we are currently participating in:
 
PR-COIN
This is a quality improvement collaborative made up of teams at rheumatology centers who in partnership with families are working together to transform how we deliver care to children with JIA. www.prcoin.org
 
Development of Autoimmunity During Puberty in SLE
This study assesses whether there are biological differences in the patients that develop SLE in childhood compared to those that develop it after puberty.
 
Development of Clinical and Ultrasound Measures for Pediatric Localized Scleroderma
The focus of this study is to improve our ability to evaluate and monitor disease state for localized scleroderma patients, using both clinical and ultrasound tools. This is a collaborative study with 10 other pediatric rheumatology centers in North America, with our site serving as the coordinating center.
 
Evaluating Quality of Life in Pediatric Rheumatology Patients
This study evaluates if there are specific patient and parent focused issues that need to be addressed for various rheumatic diseases.
 
Websmart:  Efficacy of web-based pain self-management for adolescents with JIA: 
This study looks at whether a web-based educational intervention for teens is effective in improving pain and self-management for JIA patients.
 
US/Canadian Diagnostic Registry of Children with Chronic Vasculitis (ARCHIVE, A Registry for Children with Vasculitis: e-entry)
This study is a registry of patients with systemic and brain vasculitis that aims to help improve our understanding of how to identify and manage these patients.
 
IMPROVED UNDERSTANDING OF THE BIOLOGY AND USE OF TNF INHIBITION IN CHILDREN WITH JIA:
The focus of this study is to understand how we might be able to predict when it is safe to stop TNF inhibitor medications in children whose arthritis is no longer active.
 
The Learning Cohort (TLC):
This studies web portals as a means for patients with JIA and lupus participating in the CARRA Registry to directly enter information about how they are feeling.
 
A study to evaluate the efficacy and safety of tocilizumab in active systemic juvenile idiopathic arthritis (sJIA):
This study looks at the effectiveness and long-term safety of tocilizumab (an IL6 inhibitor that is given intravenously) for patients with systemic JIA 
 
Tocilizumab in patients less than 2 years old with active systemic juvenile idiopathic arthritis (sJIA):
This studies the effect and safety of tocilizumab in sJIA patients who are less than 2 years old. This medication is already approved for use in sJIA in patients over the age of 2.
 
A Multicenter, Open-Label Study of Certolizumab Pegol in Polyarticular-Course JIA:
This study focuses on the safety and effectiveness of certolizumab, a TNF inhibitor which is given by injection once every two weeks in JIA. 
 
A Registry of Patients with Primary Immunodeficiency Disorder
This study aims to collect clinical and laboratory data on patients throughout the U.S.A. who have genetic defects in their immune system to better understand the frequency, the signs and symptoms and the complications of these disorders.
 
A Trial to Evaluate the Safety, Efficacy, and Pharmacokinetics of Belimumab in Pediatric Patients with Systemic Lupus Erythematosis (SLE)
Belimumab is the first drug approved for treatment of SLE in adults.  This study will determine if it is safe to use in patients less than 18 years of age, and if the dose in children is the same as that used in adult patients.
 
A Study to Evaluate the Safety and Pharmacokinetics of 4 x 375 mg/m2 Intravenous Rituximab in Pediatric Patients With SEVERE Granulomatosis With Polyangiitis (Wegener’s) and Microscopic Polyangiitis
This study evaluates the safety of rituximab in pediatric patients who have one of the systemic vasculitis diseases; this medication has been found to be effective and safe in adult patients with this disease.
 
Study to Investigate the Pharmacokinetics, Pharmacodynamics, and Safety of Tocilizumab Given Subcutaneously to Patients With Polyarticular-Course Juvenile  Idiopathic Arthritis 
This looks at the safety and metabolism of the medication tocilizumab when given subcutaneously to patients with poly-JIA
 
Study to Investigate the Pharmacokinetics, Pharmacodynamics, and Safety of Tocilizumab Given Subcutaneously To Patients With Systemic Juvenile Idiopathic Arthritis 
This looks at the safety and metabolism of the medication tocilizumab when given subcutaneously to patients with systemic-JIA
 
CARRA (Childhood Arthritis and Rheumatology Research Alliance) Registry:
The goal is to enroll all patients with pediatric rheumatic diseases in this North American registry to learn about the epidemiology, natural history and treatment of these diseases. It has become the largest pediatric rheumatic diseases registry in the world.
 
CARRA-LS-CTP 
This study evaluates the comparative effectiveness of three commonly used treatment regimens for active localized scleroderma patients in the CARRA Registry.
 
CARRA -LN-CTP
This study compares the effectiveness of two different medications and three different corticosteroid regimens in patients with lupus nephritis (kidney disease).
 
CARRA systemic JIA CTP pilot study:
This looks at the comparative effectiveness of the current commonly used treatments for systemic JIA in patients newly diagnosed with this disease through the CARRA Registry.
 
CARRA -JDM-CTP: 
This looks at the comparative effectiveness of the current commonly used treatments for juvenile dermatomyositis in patients newly diagnosed with this disease through the CARRA Registry.
 
Childhood Onset Rheumatoid Arthritis (CORA) CARRA Registry Study: 
Some children with juvenile idiopathic arthritis (JIA) have an early-onset form of RA, characterized by the presence of rheumatoid factor (RF) and antibodies to citrullinated cyclic peptide (CCP), both of which are serological biomarkers associated with RA. Children with CORA represent an early-onset cohort ideal to collect samples from for identifying genetic and environmental predisposing factors. 
 
 


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