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: 5/23/2023

Summary from the annual report 2022

Figure 1.3: Quality indicators for the National Quality Registry for Childhood Cancer 2022.

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 in Norway, diagnosed with cancer from 1993 through 2022, with special emphasis on newly diagnosed cases in 2022. A total of 6112 children and adolescents in the age group 0-17 years were diagnosed with cancer during the 29-year period. In 2022, there were 210 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 ado- lescents 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 or treatment regimens. Almost 40% of pediatric cancer patients are included in study protocols, most of which are treatment protocols 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 natio- nal guidelines are followed, and equal access to high quality treatment is offered regardless of geographical location. Since 2021, we have also had regular national MDT meetings (both for CNS-tumors and extra-cranial solid tumors), where challenging patients are discussed and treatment strategies are agreed upon.

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, kidney tumors and germ cell tumors), other diagnoses are still challenging, with survival rates of only 60-80% (bone tumors, acute myeloid leukemia and certain types of brain tumors). Overall survival from cancer in children and adolescents is now 88,9%, which is comparable to the best international results regarding survival.

In addition to the never-ending pursuit to improve prognosis, focus is redirected from survival as the only 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 almost 7,000 individuals 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 and follow-up 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. Through 2022, the registry has had specific focus on measures to improve registration for these variables, starting with those diagnosed with a brain tumor. We are hoping to present the first results from this effort in next year’s report.

In this year’s report we present a new analysis on the use of targeted and personalized non-chemotherapeutic drugs, which are used for an increasing number of patients, especially for some rare cancers, as well as an addition for cancers with a poor prognosis and for those patients where toxicity is severe.