Observational Study for Pediatric Rheumatic Diseases: The CARRA Registry
Investigation of Pediatric Onset Rheumatic Diseases
Brief description of study.
The purpose of this study is to collect information regarding treatment plans and disease activity of current patients with pediatric onset rheumatic diseases, in the hopes that this information can help improve treatments and health outcomes for future patients.
Detailed description of study
The purpose of this study is to collect information regarding treatment plans and disease activity of current patients with pediatric onset rheumatic diseases, in the hopes that this information can help improve treatments and health outcomes for future patients.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: systemic erythematosus,juvenile idiopathic arthritis,erythematosus,idiopathic arthritis,arthritis,rheumatic disease,rheumatic,pediatric,youth,adolescent,riley,kid,kids,child,children,teen,teens,teenager,teenagers,young adult,registry,database
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Age: 21 years or below
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Gender: All
Inclusion Criteria
For JIA, must have disease onset prior to age 16, and at least one of the following four criteria:
All systemic JIA (regardless of diagnosis date and joint count)
All JIA who have ever had active arthritis of 5 or more unique joints cumulatively since disease onset
Any JIA patient (regardless of diagnosis date and joint count) starting or re-starting methotrexate or any biologic agent, regardless of medication history (must be enrolled at the visit the medication is prescribed, or the immediate subsequent visit)
New onset JIA regardless of joint count and ILAR category (new onset is defined as diagnosed within the last six months)
For SLE, must have disease onset prior to age 18, and has been diagnosed within the past 24 months, or have a prior SLE diagnosis with new onset lupus nephritis within the past 24 months. Must meet at least four of the following clinical criteria and one immunologic criterion, or have a biopsy proving nephritis compatible with SLE:
Acute cutaneous lupus
Chronic cutaneous lupus
Oral ulcers
Nonscarring alopecia
Nonerosive arthritis
Serositis
Renal
Neurologic hemolytic anemia
Leukopenia
Thrombocytopenia
Also allowed are patients with the following related conditions, diagnosed within the past 24 months:
Acute cutaneous lupus (without SLE)
Chronic cutaneous lupus
Mixed connective tissue disease
Sjogren?s syndrome
Anti-phospholipid antibody syndrome
Probable SLE (at least 3 criteria in the last 24 months)
Exclusion Criteria
Greater than 21 years of age at the time of enrollment.
This study investigates pediatric onset rheumatic diseases, which are conditions that affect the joints and muscles in children. The study aims to gather information on how these diseases are currently treated and how active they are in patients. This information will be used to understand the diseases better and to potentially improve treatments for future patients.
Participants in the study will undergo assessments to collect data on their treatment plans and disease activity. The study focuses on conditions like Juvenile Idiopathic Arthritis (JIA) and Systemic Lupus Erythematosus (SLE), and it includes various procedures to monitor these conditions over time.
- Who can participate: Children with Juvenile Idiopathic Arthritis (JIA) who had disease onset before age 16, or those with Systemic Lupus Erythematosus (SLE) before age 18, are eligible if they have active arthritis or meet specific clinical criteria related to SLE.
- Study details: Participants will be involved in assessments to gather information about their treatment plans and disease activity. The study does not involve any experimental treatments or medications.