Norwegian Sarcoma Cancer Registry
Sarcoma is cancer of connective and supporting tissues of the body and can occur in any location and organ. Sarcoma represents a main group of rare cancers in Europe, and accounts for approx. 1 percent of all diagnosed cancer cases. There has been a stable incidence of sarcoma in recent years, and in 2023, 570 patients were diagnosed with sarcoma.
More than 80 subtypes of sarcoma have been described with great variation in aggressiveness and degree of malignancy, and with different prognoses in terms of recurrence and survival.
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 National treatment guidelines for diagnosis, treatment and follow-up of patients with sarcoma is being followed.
There is a tradition of extensive collaboration across the health regions regarding the assessment and treatment of particularly difficult disease cases. In 2022, a national multidisciplinary team (MDT) for sarcoma was established. Digital meetings are held via Norsk Helsenett every two weeks and between 2 and 4 patients are discussed each time. The intention is to discuss all new patients with bone sarcoma and the most complicated cases of soft tissue sarcoma that need multidisciplinary treatment.
The registry will be an important tool in improving the quality of the healthcare provided to patients with sarcoma. The sarcoma registry does not currently have national status.
More about sarcoma on kreftregisteret.no
Information about soft tissue sarcoma and bone sarcoma on the Cancer Society's pages.
Reporting to the registry
Registration of clinical information to the Norwegian Sarcoma Cancer Registry is done electronically via KREMT on the Norsk helsenett. KREMT includes functionalities for making the 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.
Degree of coverage and data quality
Patient group
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.
Levels of care
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.
