This project seeks to collect data on healthcare utilization and expenditure rates in Juvenile Idiopathic Arthritis (JIA) patients from across the US, correlate these costs with disease activity and outcome measures and determine methods by which to reduce the economic impact while improving outcomes.
SPECIFIC AIMS AND OBJECTIVES The specific aims of this registry protocol are: * To create and maintain a secure online database of patients with JIA * To collect data elements related to cost of care in patients with JIA * Compare standard outcome and disease activity measures to health care expenditures in JIA * To determine methods by which to reduce costs while improving outcomes and quality of care The study plans to enroll 300 or more subjects from 3 medical centers in the US over a 24 month period. Subjects in the study are patients with Juvenile Idiopathic Arthritis. Enrollment into the protocol will include key demographic and clinical data including, medication exposures, disease severity, and function including disease-specific data elements; and estimates of health care service utilization and health care expenditures. Data will be collected once per subject within the context of a standard of care visit.
Study Type
OBSERVATIONAL
Enrollment
165
Children's Hospital & Medical Center
Omaha, Nebraska, United States
The Cleveland Clinic
Cleveland, Ohio, United States
Dell Childrens Medical Center of Central Texas
Austin, Texas, United States
Direct and indirect costs
Patient's history will be reviewed for the prior 6 months to enrollment for expenses incurred related to JIA and it's treatment. This will be done through chart review and questionnaires completed by the patient/parent.
Time frame: 6 months prior to enrollment
Health related quality of life questionnaires
Self reported questionnaires will be completed by parent.
Time frame: Day 1
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