- Registry Manager: Stockholm County Council
- Registry Centre - affiliation: Regional Cancer Centre South
- Start year: 1981
- Classifications used:
- This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Follow-up Data 3-5 months after the case is registered in the registry, Follow-up Data 6-11 months after the case is registered in the registry, Follow-up Data 12 months or later after the case is registered in the registry
Description of registry
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.
ICD-O/3 and SNOMED/3-codes. The Swedish seminoma registry covers all patients with newly diagnosed testicular cancer from 1 April 2000 onwards, and from 1 January 2012 onwards, extragonadal retroperitoneal and mediastinal seminomas have also been registered (ICDO-O/3: C62, C48.0 och C38.3, SNOMED/3: 90613).
Definition of testicular primary tumour (ICD C 62):
- Primary tumour located in the testis.
- Tumour in retroperitoneal lymph nodes and pathological findings at ultrasound of testis leading to orchiectomy and the histopathological examination shows scars (fibrotic area) in the testicle, so-called “burned out” tumour. If these criteria are not fulfilled, the tumour is classified as extragonadal retroperitoneal (ICD C 48.0) or medistinal semitomatic cancer (ICD C 38.3) with the same SNOMED/3 as above. These are registered on a separate form.
- Only SNOMED/3 code 90613 should be included in the quality registry for seminoma and 91013, 91003, 90703, 90713, 90853, 90653, 90813, 90803, 906130 for non-seminoma.
- Sex/Age: Men over age 16.
- Patients who do not have a Swedish personal identity number cannot currently be registered in INCA, but data is saved on paper forms for later registration.
- Patients who have temporarily moved out of the country but who have a Swedish personal identity number and who have been examined and treated for testicular cancer in Sweden should also be included in the quality registry.
- Diagnosis at autopsy.
- Patients treated abroad who come to Sweden during the follow-up period.
Ages in the registry
Men over age 16.
Total volume of registry
Volume over the past operating year
About 280 new cases per year.
Nearly 100 percent coverage is sought, and achieved with subsequent supplementations to the registry. For the three years prior to the 2011 annual report, the coverage rate in relation to the cancer registry was 86 percent in total, with relatively large regional differences. Due to the small patient volume per year, a small amount of dropout data has a major impact on the percentage outcome.
Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.