Norwegian Childhood Cancer Registry

The Norwegian Childhood Cancer Registry contains data on cancer diagnoses for children aged 0-17 years dating back to 1985.
Last updated: 8/31/2022

Summary from the annual report 2021

Figure 1.3: Quality indicators for the National Quality Registry for Childhood Cancer 2021.

This annual report from the National Quality Registry for Childhood Cancer describes incidence, treatment and survival of all children and adolescents below the age of 18 with cancer diagnosed from 1985 through 2021, with special emphasis on newly diagnosed cases in 2021. A total of 6781 children and adolescents in the age group 0-17 years were diagnosed with cancer during the 36-year period. In 2021, there were 216 newly diagnosed cancers in this age group. The incidence of childhood cancer in Norway has shown a slight increase from 1985 until the turn of the millenium, thereafter the incidence seems to have stabilised. There are no clear regional differences in this incidence pattern.

Reliable national data are essential to ensure high quality of childhood cancer care. Cancer in children and adolescents accounts for less than 1 % of all cancer cases in Norway. In addition, since pediatric cancer consists of 12 diagnostic groups, each with many subgroups, the number of patients with each diagnosis is very small (from 2 to 10 cases per year). For the most part, investigation, staging, and treatment follow international protocols. Almost 40 % of pediatric cancer patients are included in treatment study protocols, which are monitored and run according to GCP (Good Clinical Practice) international standards. This is a very high proportion in comparison to adult cancer patients included in clinical studies.

Diagnostic workup and most of the treatment takes place at one of the four regional pediatric cancer centers; Oslo University Hospital, Haukeland University Hospital, St. Olav’s Hospital and University Hospital of North Norway. At all departments, regular MDT meetings (MDT = Multidisciplinary Team) are held, ensuring that common national guidelines are followed, and equal access to high quality treatment is offered regardless of geographical location.

The Childhood Cancer Registry’s annual report also facilitates the opportunity to compare Norwegian results with other Nordic and European countries. Treatment results are closely related to the type of cancer. While some cancers have more than 90 % long-term survival (retinoblastoma, acute lymphocytic leukemia, lymphomas, liver tumors, kidney tumors, germ cell tumors), other diagnoses are still challenging, with survival of only 60-80 % (bone and soft tissue tumors, acute myeloid leukemia, certain types of brain tumors). Overall survival from cancer in children and adolescents is now 87,6 %, which is comparable to the highest international results regarding survival.

Together with improvement of prognosis, focus is redirected from survival as the main goal, to survival with a minimum of late-effects. As many as 4 out of 5 childhood cancer survivors today are living with late effects of varying severity. In this year’s report, we focus on the fact that more than 6,000 people are currently alive in Norway, after receiving a cancer diagnosis before the age of 18 years. It is of utmost importance that these individuals are offered lifelong medical care after their cancer treatment.

Since January 2019, the registry has used an extended set of variables, which not only provides more accurate registration of disease stage, diagnosis and treatment, but also allows registration of late effects. It is, however, too early to report on late effects in this year’s report.