National Quality Registry for Testicular Cancer (SWENOTECA)
Registry category: Cancer diseases
Certification level: 2
Central personal data controller (CPUA): Karolinska Universitetssjukhuset
The overall aim of the SWENOTECA registry is to contribute to increased knowledge about, and improved diagnostics and treatment for, testicular cancer in Sweden. More concretely, the registry aims to:
- give individual clinics and regions the opportunity to compare their own data with reported national data regarding the care and treatment of patients with testicular cancer and the results of this treatment. Such information can provide incentives for improvements at individual clinics or within an entire region
- analyse survival in different tumour stages and different risk groups
- analyse the results of different national treatment programmes
- provide reference material for the preparation of care programmes and for treatment studies concerning the various diagnoses
- facilitate biobank work (a national biobank is under construction)
To achieve the above targets, registration must be of high quality with a high coverage rate. The validity of data will be checked regularly and a coverage analysis in relation to the cancer registry will be performed annually.
The registry contains information on diagnostics, tumour data, clinical stage at diagnosis, lead time from diagnosis to definitive clinical staging and lead time to the start of treatment. Regarding treatment, information is available on where the treatment is provided, on the reasons for all provided treatment (cytostatic treatment, radiation therapy and surgery), and the effects and side effects of treatment over the short and long term. Registration with the registry replaces the clinical cancer registration.
The primary results measured are survival, complication and recurrence rate, and lead times.
Find contact information on the registry’s website.