Finnish Rheumatology Quality Register

Sandbox directory

The data is available in the following Sandbox directory:

/finngen/library-red/task_force_data/Rheumatic_diseases/data/finngen_R13_rheumatology_register_measurement_1.0

Please refer to the readme file in the sandbox directory for full details of the available data.

Description

The Finnish Rheumatology Quality Register is a nationwide clinical registry that collects data on both children and adults diagnosed with inflammatory rheumatic diseases in Finland (excluding the Åland Islands).

Patients are included based on the following ICD-10 diagnostic codes for rheumatic diseases recorded in hospital outpatient clinics or inpatient wards: M02.x, M05.x, M06.x, M07.x*, M08.x, M09.x*, M10.x, M12.0, M12.3, M13.x, M30.x, M31.x, M32.x, M33.x, M34.x, M35.x, M45, M46.0, M46.1, M46.8, M46.9, M86.3, M86.6, M86.8, M94.1, K50.9, K51.9, L40.5, H20.0, H20.1, H20.8, H20.9, H22.1, H30.2.

The entire register contains approximately 130,000 patients, 27,300 of whom are included in FinnGen. For the redefined FinnGen endpoints (i.e. patients with a minimum of three recorded diagnoses), registry coverage varies from 45% for patients with Sjögren's syndrome to 69% for patients with seropositive rheumatoid arthritis.

The register includes patient- and physician-reported data from 1 January 2000 onwards, with some information collected retrospectively. The data includes, among other things, the patient's VAS assessments of their pain and general well-being, the physician's VAS assessment of rheumatic disease activity overall, and indicators of disease activity such as DAS28, SJC, TJC, HAQ, ASDAS, BASDAI and BASFI. Data also includes inflammation values for CRP and ESR, as well as medications used.