Contents of the Register
Note: If you are applying for data from the medical quality registries, these must be added as separate data sources in the application form.
Important Information Regarding Access to Individual/Personally Identifiable Data for 2023 from the HKR Base Register
The Cardiovascular Disease Registry's base register is undergoing a modernization process, which includes transitioning to a new technical platform and developing a new extraction solution for individual data. As part of this process, it has been decided to pause the release of individual data for the 2023 cohort from the base register until the new extraction solution is ready. The solution is expected to be completed during the first half of 2025. Only then can individual data for the 2023 cohort be made available.
Individual data for the period 01.01.2012 – 31.12.2022 is being released as usual from the base register.
Applicants needing data for 2023 from the HKR base register have the following options:
- Apply for equivalent data from NPR and/or DÅR until the new extraction solution for the HKR base register is ready.
- Data from the HKR base register will be released to projects in two phases, with data for 2023 being released as soon as the new extraction solution is ready.
Information in the Register
The base register contains information about individuals with cardiovascular diseases who have been hospitalized or had outpatient consultations in the specialist health service. It also includes information about individuals with a cardiovascular diagnosis as the cause of death, as well as the cause of death for individuals previously treated for cardiovascular disease in the specialist health service. Cause of death data is retrieved from the Cause of Death Register.
The medical quality registries contain more detailed information about each case and its treatment.
HKR is a directly personally identifiable health register, authorized under § 11 h of the Health Register Act and regulated by the Cardiovascular Disease Registry Regulations.
The Norwegian Institute of Public Health (FHI) is the data controller and processor for the base register, while various health trusts are data processors for the associated quality registries, which include:
- Norwegian Stroke Register at St. Olavs Hospital HF
- Norwegian Myocardial Infarction Register at St. Olavs Hospital HF
- Norwegian Heart Surgery Register at Oslo University Hospital HF
- Norwegian Cardiac Arrest Register at Oslo University Hospital HF
- Norwegian Heart Failure Register at St. Olavs Hospital HF
- Norwegian Vascular Surgery Register (NORKAR) at St. Olavs Hospital HF
- Norwegian Register for Invasive Cardiology (NORIC) at Helse Bergen HF
- National Quality Register for Ablation Treatment and Electrophysiology (AblaNor) at Helse Bergen HF
Variables
Go to the variable overview to create variable lists and to see detailed information about the variables in this data source.
Open data
Interactive statistical databases:
Public statistics from the quality registries in HKR are available here:
Criteria for data access
The data sources have different purposes and are regulated by different laws and regulations. In order to access information from the data sources, what you plan to use the information for must be in accordance with the purpose of the data source.
The types of approvals and documents you must submit to access information depend on what you are applying for, what you are going to use the information for and how you are going to process it. We therefore recommend that you take the time to familiarize yourself with the application guides before starting the application process:
Application guide for anonymous, aggregated data (statistical data)
Application guide for personally identifiable data
Purpose
The purpose of the Cardiovascular Disease Registry is stated in § 1-2 of the Cardiovascular Disease Registry Regulations. It states that the registry shall contribute to improved quality of healthcare for individuals with cardiovascular diseases. The information in the registry shall be used for:
- Preventive work
- Quality improvement
- Health research
The registry shall also serve as a basis for the management and planning of health services targeting individuals with cardiovascular diseases, and contribute to monitoring new cases and the prevalence of such diseases in the population.
Application for Access to Data
When you apply for information from this data source, your application is processed by Helsedataservice. The actual data is made available directly by the Norwegian Institute of Public Health.
You can apply for access to data from the registry via the application forms at helsedata.no.
Fees for Data Access
Several parties are involved in making health data available, so you may receive multiple invoices. Helsedataservice charges for application handling and case processing of applications submitted via helsedata.no, while the register administrators charge for data preparation and provision.
- Fees at FHI: FHI may decide that the applicant must fully or partially cover the actual costs associated with extraction, compilation, and preparation of health data made available.