Table 1 Data items collected in the CARRA Registry
Data element |
|---|
Demographics: birthdate, race, sex, household income |
Other medical diagnoses |
Family medical history |
Health insurance provider |
Dates of onset of disease symptoms, disease diagnosis, and first pediatric rheumatology evaluation |
Current and past rheumatology medications: start date, stop date, dose, frequency, route of administration, reason for discontinuation |
Current glucocorticoid dose and presence of any glucocorticoid use since last visit (oral, intravenous, or intra-articular) |
JIA ILAR category and associated inclusion criteria |
ANA, Anti-CCP, RF, HLA-B27 results |
Total number of joints ever affected by arthritis (<5 or ≥5) |
Disease manifestations in the past 2 weeks: fever, rash, generalized lymphadenopathy, hepatomegaly, splenomegaly, serositis, psoriasis |
Height, weight, blood pressure |
Total number of joints with active arthritis |
Total number of joints with limited range of motion |
Presence and number of tender entheses |
Presence of clinically active sacroiliitis |
Duration of morning stiffness |
Modified Schober test measurement |
Radiographic damage |
Imaging evidence of sacroiliac joint damage |
Imaging evidence of active sacroiliitis |
Presence of uveitis (ever) |
If uveitis ever present: date of diagnosis, date of most recent eye examination, current best corrected vision, ever/current use of steroid eye drops, ever use of intra-ocular or sub-tenon glucocorticoid injections, presence of anterior chamber cells, uveitis complications, eye surgery |
Laboratory results (if obtained): AST, ALT, C-RP, ESR, ferritin, WBC, % neutrophils, hemoglobin, platelet count, total cholesterol, triglycerides |
Physician global assessment of disease activity |
Study subject contact information |
Patient/parent global assessment of overall well-being, patient/parent assessment of disease activity |
Childhood Health Assessment Questionnaire (CHAQ) |
Pain intensity, PROMIS® pain interference, and pain due to rheumatic condition |
PROMIS® upper extremity physical function, PROMIS® mobility |
PROMIS® Pediatric Global Health 7 |