Norwegian Sarcoma Cancer Registry
Sarcoma is cancer of connective and supporting tissues of the body and can occur in any location and organ.
Work on a Norwegian Sarcoma Cancer Registry in the Cancer Registry of Norway started in 2015. A working group with representatives from all the health regions defined the content of the quality registry. The reference group for the current Advisory Unit on Sarcoma shall serve as the advisory board for the registry.
The Norwegian Sarcoma Cancer Registry was put into operation in 2019 and contains systematically registered data from 2018. The annual report focuses on whether the action programme for diagnosis, treatment and follow-up of patients with sarcoma is being followed.
This year's report shows for the first time several figures on drug treatment of sarcoma. Several patients with soft tissue sarcoma of the extremities and trunkus are receiving drug therapy in addition to surgery. The use of drug therapy for abdominal and retroperitoneal tumors is not as widespread.
The Norwegian Sarcoma Cancer Registry does not currently have national status, but in June 2021 the Cancer Registry of Norway again asked the South-Eastern Norway Regional Health Authority to support an application for national approval for the registry. The quality registry shall be an important tool in improving the quality of the health care provided to patients with sarcoma.
562 patients were registered with sarcoma in 2022. Sarcoma is a rare type of cancer and is a collective term for cancer of connective tissue (in contrast to most other types of cancer that occur in glandular tissue). More than 80 subtypes of sarcoma have been described with great variation in aggressiveness and degree of malignancy, and with different prognosis in terms of relapse and survival.
Registration to the register
Registration of clinical information to the Norwegian Sarcoma Cancer Registry is done electronically via KREMT on the Norsk helsenett. KREMT has functions to make the work with reporting easier.
Reminders for missing messages and receipts for submitted messages are available in the KREMT portal. It is also possible to cache forms.
To encourage reporting, administrative and clinical statistics have been compiled that provide hospitals with updated results for their unit. These statistics are updated daily.
The registry contains detailed information on all cases of sarcoma and information from assessment, treatment and follow-up of this patient group.
This group of cancers is treated with surgery, chemotherapy and radiation therapy.
Patients with sarcoma are assessed, treated and followed up in both the primary and specialist health services. All doctors who provide health care to this patient group are obliged to report to the Cancer Registry, which includes the Norwegian Sarcoma Cancer Registry.