Contents of the register
Information about diabetes among individuals aged 18 and older.
Population and geography
The Norwegian Diabetes Register for Adults includes approximately 200,000 individuals aged 18 and older with diabetes. Data is transferred to the register from general practitioners, practicing specialists, and hospital outpatient clinics at least once a year, although not all patients will have annual data. The register also collects data directly from individuals with diabetes via Helse Norge.
Inclusion or exclusion criteria
In the specialist healthcare services, the following diagnosis codes are included: E10, E11, E13, E14, and O24. These diagnosis codes cover type 1 diabetes (including LADA*), type 2 diabetes, other types of diabetes (including pancreatitis and MODY**), and gestational diabetes.
In primary healthcare services, the following diagnosis codes are included: T89 and T90. These diagnosis codes cover type 1 diabetes (including LADA*), type 2 diabetes, and other types of diabetes (including pancreatitis and MODY**).
*Latent Autoimmune Diabetes in Adults
**Maturity-Onset Diabetes of the Young
Data collection period
Data from 2009 to the present.
Variables
An overview of variables with definitions can be found in the variable list here: Data Access.
Data quality
See the register's annual reports for updated status on data quality: Annual reports, feedback reports, and interactive results | Noklus.no
Open data
You can find published data from the Norwegian Diabetes Register for Adults in the annual reports, feedback reports, and interactive results on Noklus.no.
Purpose
The purpose of the Norwegian Diabetes Register for Adults is to improve the quality of treatment and follow-up for individuals with diabetes. The register will also serve as an important foundation for research on diabetes and diabetes-related diseases.
Prices for access to data
The applicant shall receive a response to the application as soon as possible and no later than 21 days from the receipt of the application. The register strives to provide the information within 60 days after the application has been approved. If the deadline cannot be met for special reasons, the register will provide a preliminary response explaining the reason for the delay and when the information can be delivered.
Prices
The register charges for the hours spent on the actual data extraction. The price per hour is NOK 1940, excluding VAT. There is no charge for case processing and guidance.
Apply for access to data
Applications should be sent to noklus@noklus.no.
More information and the application form can be found here: Data Access.
Data processor and data controller
Data Processor: Noklus (Norwegian Quality Improvement of Laboratory Examinations) at Haraldsplass Deaconess Hospital
Data Controller: Haukeland University Hospital
Data linkage across multiple sources
Data can be linked with other registers specified in the register's opt-out letter: Opt-out | Noklus.no.
Legal basis
The Norwegian Diabetes Register for Adults is based on the right to opt-out and originally had a license from the Norwegian Data Protection Authority, in accordance with the Health Register Act §5, cf. the Personal Data Act §33, cf. §34 (license letter from the Data Protection Authority dated 18.08.2005, ref 2005/172-7). From 20.07.2018, the register is operated in accordance with the new Personal Data Act and the EU General Data Protection Regulation (GDPR). The register became opt-out based in November 2020. Research projects using data from the register must be approved by the Regional Committee for Medical and Health Research Ethics (REK).