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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:
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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | 6 months prior to enrollment |
| Measure | Description | Time Frame |
|---|---|---|
| Health related quality of life questionnaires | Self reported questionnaires will be completed by parent. | Day 1 |
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Inclusion Criteria:
Exclusion Criteria:
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Children, adolescents, and young adults with JIA within Cleveland Clinic Health System and at several other participating study sites.
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| Name | Affiliation | Role |
|---|---|---|
| Andrew Zeft, MD | Cleveland Clinic Children's Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Children's Hospital & Medical Center | Omaha | Nebraska | 68114 | United States | ||
| The Cleveland Clinic |
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| ID | Term |
|---|---|
| D001171 | Arthritis, Juvenile |
| ID | Term |
|---|---|
| D001168 | Arthritis |
| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
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| Cleveland |
| Ohio |
| 44195 |
| United States |
| Dell Childrens Medical Center of Central Texas | Austin | Texas | 78723 | United States |
| D003240 |
| Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |