National Quality Registry for Breast Cancer (NKBC)

• Registry Manager: Stockholm County Council
• Registry Centre - affiliation: Regional Cancer Centre Stockholm Gotland
• Start year: 2008
• Classifications used: ICD10
• This registry contains data on: Diagnoses, Intervention, PROM or other patient-reported health effects, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

The aim of the National Quality Registry for Breast Cancer is to:

• in an objective and standardised manner, monitor the continuum of care from diagnosis to any recurrence and death
• enable the identification of regional differences
• collectively relate to current guidelines and quality targets set by specialist associations and the National Board of Health and Welfare
• facilitate research and developments in breast cancer.

The registry contains data on preoperative diagnostics, tumour data, type of surgery, waiting times in diagnosis and treatment, long-term and short-term complications and recurrence rate, and patient satisfaction (including cosmetic).

The primary results measured are survival, complication and recurrence rate, and the number of satisfied patients.

The registry provides the opportunity for comparisons and feedback on national, regional and local levels on diagnosis, treatment patterns and outcomes. The registry also provides an opportunity for registration of the national quality indicators developed in conjunction with the Swedish Board of Health and Welfare’s national guidelines for breast cancer.

Population

Inclusion criteria: Primary breast cancer C50*. The first incidence of breast cancer on each side is included. Women and men. All ages. Invasive and in situ breast cancer.

Exclusion criteria: Post-mortem-detected cases. Phyllodes tumour, sarcoma and lymphoma. Patients with protected identities. Patients who do not want to be included in the registry. Patients with temporary non-resident patient numbers.

Ages in the registry

All ages.

Total volume of registry

Diagnosis year 2008-2012: approx. 40 000 cases.

Volume over the past operating year

Diagnosis year 2011: 8 363 cases.

Coverage rate

Coverage rate for reporting of primary diagnosis in 2011: 96-99 percent depending on region.

References on validations

Region South has conducted a validation study of reported data. Region North is planning a validation study.

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