Degree of coverage and data quality
Article
|Last update
Degree of coverage and completeness
The Norwegian Childhood Cancer Registry contains all cancer cases registered in children under 15 years of age from 1st of January 1985 to 31.12.2023. As of 1st of January 2016, adolescents aged 15-17 were included in the registry, but the reporting of clinical assessment and treatment reports is not complete during this transitional period, until new registration forms were introduced from the year of diagnosis 2019. Prevalence and survival are nevertheless complete for the entire age group of 0-17 years in the Cancer Registry's basic registry.
The Cancer Registry's basic registry contains information on 98.6 % of all cancer patients (all ages, all diagnoses) in the period 2019-2023. The reporting to the Children's Cancer Register is good. All children and young people diagnosed with a cancer diagnosis under the age of 18 must be included in the Children's Cancer Registry. The coverage rate for assessment and treatment notifications for 2023 is 94.4 % and 93 % respectively.
Read more about coverage and data quality in the Annual Report 2023 Childhood Cancer (Norwegian only)
Data quality
Quality assurance of data is done as an integral part of the coding and registration process. In addition, the following examples help to ensure data quality in the Cancer Registry:
- Several independent sources report information
- The information is reported at several points in the course of the disease
- The completeness of the quality register is calculated and assessed through annual coverage rate analyses
- The employees have unique expertise in coding cancer cases according to the Cancer Registry's own code book and international coding systems
- IT systems have rules and barriers for illogical combinations, incorrect information and more
- The Cancer Registry of Norway conducts analyses and control runs that reveal inconsistency in the data
- Data extraction for researchers makes it possible to check a smaller data set of information that can reveal individual errors (e.g. incorrect entry of hospital codes) or systematic differences due to different interpretations of coding systems and rules
- The quality register annually performs a validity analysis where information on radiation therapy and drug cancer treatment registered in the Cancer Register is compared with information on radiation therapy and drug cancer treatment registered in the Norwegian Patient Registry