National Quality Registry for Paediatric Rheumatology

• Registry Manager: Östergötland County Council
• Registry Centre - affiliation: Registry Centre Stockholm (QRC Stockholm) + Registry Centre South East (RCSO)
• Start year: 2009
• Classifications used: ICD10, ATC (pharmaceuticals)
• This registry contains data on: Pharmaceuticals, Diagnoses, disease activity (JADAS), Local steroid injections, Patient-reported measurements including quality of life (Disabkids) and disability (CHAQ), uveitis. Continuous registration of all data.

Description of registry

The registry was created to monitor all patients with juvenile idiopathic arthritis (JIA) in cooperation with patients and care providers to increase the quality of care and improve health and quality of life for the patients. The primary goal is to follow all patients with JIA treated with biologic agents. The secondary goal is to follow all patients with JIA regardless of therapy.

Population

Patients 0-17 years of age with juvenile idiopathic arthritis in Sweden.

To some extent, patients with other paediatric rheumatic diseases.

Ages in the registry

Ages 0-17 (up to age 18).

Total volume of registry

2600 patients (2000 active).

Coverage rate

60 percent of all JIA (active and inactive disease). Over 90 percent of biological therapy for JIA. All care providers for JIA in Sweden participate.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.