Norwegian registry of brain and spinal cord tumours
The Norwegian Registry of Brain and Spinal Cord Tumours (Brain Tumour Registry) has newly established. The establishment is a collaboration between the Cancer Registry of Norway and the Brain Tumor Consortium, which was established in 2021 after a family initiative and funding from the Norwegian Cancer Society and the Brain Tumor Association. Our ambition is for the quality registry to contain detailed information on the course of disease and treatment of patients with tumours in the brain, spinal cord and spinal canal, membranes of the brain and spinal cord and pituitary gland.
The Norwgian Registry of Brain Tumors publishes its first annual report in 2023 with results from 2022. In some areas, the work on the annual report for 2022 has revealed weaknesses in data quality, and the coverage rate for clinical reports is so low that we could not use these data. In 2022, 652 histologically verified tumours were detected in the brain, spinal cord and spinal canal and brain and spinal cord membranes.
Registration to the register
Registration of clinical information to the Norwegian Registry of Brain Tumours is done electronically via KREMT on the Norwegian Health Network. 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 Professional Council has prepared two new clinical notification forms, one for assessment and one for surgical procedures. In the course of 2023, these will replace the message «Clinically solid tumour», which until now has been used for this patient group.
The registry contains detailed information on all cases of primary brain tumours and information from assessment, treatment and follow-up of this patient group.
The registry includes new-onset primary tumours in the brain, spinal cord and spinal canal, the brain and spinal cord membranes or the pituitary gland of people who were 18 years of age or older at the time of diagnosis. Brain metastatic ases are not included because they are registered in the quality registries for the origin of the metastasis. Some tumour types, such as melanomas, lymphomas and some soft tissue tumours, are excluded because they belong to other tumour groups.
In the Norwegian Registry of Brain and Spinal Cord Tumours, we will register detailed information on the assessment and treatment of patients with tumours in the brain, spinal cord and spinal canal, membranes of the brain and spinal cord and pituitary gland. To achieve this goal, the reporting of clinical reports to the Cancer Registry of Norway must increase considerably in the coming years. The first annual report is based on data that are routinely reported to the Cancer Registry, mainly data from pathology reports as well as data on radiotherapy and drug therapy. We also use data from the Norwegian Patient Registry.
Patients with brain and spinal cord tumours are assessed, treated and followed up by both the primary health service and the specialist health service. Patient care takes place in close collaboration between several medical specialties. All doctors who provide health care to patients with tumours in the brain, spinal cord and spinal canal, brain and spinal cord membranes and pituitary gland are obliged to report to the Cancer Registry of Norway and the Norwegian Registry of Brain and Spinal Cord Tumours.
Findings (Norwegian only)