Coverage and data quality for the Gynecological Cancer Registry

Degree of coverage and completeness

All patients with ovarian and cervical cancer in Norway must be included in the registry.

All doctors who provide health care to patients with cancer are obliged to report to the Cancer Registry. This includes reporting to the National Quality Registry for Gynecological Cancer.

Data are collected from all the country's hospitals. Treatment for ovarian cancer is centralised at the hospitals OUS Radium Hospital, St. Olavs Hospital, Haukeland University Hospital, UNN in Tromsø and Stavanger University Hospital. These account for most of the data reported to the register.

The Cancer Registry's basic registry contains information on 99.8 % of all patients with ovarian cancer and 100.0 % of all patients with cervical cancer. The coverage rate for assessment reports in 2022 is 87.1 % for ovarian cancer and 85.3 % for cervical cancer. Analyses of coverage per hospital are shown in the annual report (Norwegain ionly)

The Cancer Registry of Norway has had a strong focus on increasing the coverage in recent years, which has resulted in improved reporting to all quality registries.

For ovarian cancer, In the previous annual reports, the Gynaecology Registry reached the target of over 80 per cent coverage for assessment reports, the coverage rate for the whole country is 87.1 per cent in 2022. For surgery reports, the target is 90 % coverage, the coverage rate for the whole country in 2022 is 94.4 %. 

2020 is the first year in which cervical cancer data are also included in the registry, and the clinical coverage for this type of cancer is currently low. In the time ahead, particular focus will be placed on getting the regional hospitals up and running with good routines for clinical reporting of cervical cancer data. All hospitals have high goal attainment in 2022. Theoverall degree of assessment for the assessment report is 85 %, while for the surgical report the coverage is 69.9 %. The Norwegian Radium Hospital is the only hospital that does not reach the target of 60 %, with a coverage rate of 55.2 %. 

There has already been a dialogue with the Norwegian Radium Hospital, which investigates and treats a significant proportion of the country's cervical cancer patients. They will set aside resources for clinical reporting of cervical cancer in the future.

The professional council in the registry has representatives from all hospitals with special expertise in gynaecological oncology. These act as contact persons in the departments and are regularly updated on the status of enrolment at professional council meetings and via email from the Cancer Registry.

Data quality

The data quality for the entire group of patients with ovarian cancer is considered to be very good because the Cancer Registry of Norway makes a specific assessment of all pathology results from the laboratories.

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 Cancer Registry's employees have unique expertise in coding cancer cases in accordance with 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