====== Registry data at NORMENT ======
On this page you will find an overview of Norwegian data registries and a brief description of what some of them contain. You will also find information on which of these registries are avaible in the TOP project, how to get access to these data and terms of use.


===== Norwegian data registries =====
Overview of the mandatory national health registries:\\
[[https://fhi.no/en/more/access-to-data/about-the-national-health-registries2/]]

Overview of different types of data sources.\\
Health registers, medical quality registers, health surveys, biobanks, open data and statistics.\\
https://helsedata.no/no/datakilder/?page=1&sort=0

==== Registries at The Norwegian Directorate of Health - Helsedirektoratet ====
* **KPR**\\
//Norwegian Register of Primary Health Care (The Municipal Patient and User Register)\\  
Kommunalt pasient- og brukerregister//\\
Information from the primary health services about activity and treatment. Start date 2016.\\
* **IPLOS**\\ 
//Norwegian Information System for the Nursing and Care Sector\\
Lovbestemt helseregister for kommunale helse- og omsorgstjenester//\\
Information about persons who have applied for or received health and care services from their municipality in the period 2007-2017. As of 2018, the IPLOS information is included KPR.\\
* **NPR**\\
//Norwegian Patient Registry\\ 
Norsk Pasientregister//\\
Information from specialist health services about activity and treatment. Start date 2008.\\
* **KUHR**\\
//Norway Control and Payment of Health Reimbursement\\ 
Kontroll og utbetaling av helserefusjoner//\\
Contains reimbursement claims from therapists and HELFO and provides data on patients treated at primary care level from the entire country. Start date 2006.\\


==== Registries at the National Institute of Public Health - Folkehelseinstituttet  (NIPH/FHI) ====
* **MBRN/MFR**\\
//Medical Birth Registry of Norway\\
Medisinsk fødselsregister//\\
Information about pregnancies and births in Norway. Start date 1967.\\
* **CoDR/DÅR**\\
//Norwegian Cause of Death Registry\\
Dødsårsaksregisteret//\\
The official cause of death statistics for Norway. Start date 1951.\\
* **SYSVAK**\\
//Norwegian Immunisation Registry\\
Nasjonalt vaksinasjonsregister//\\
Records an individual’s vaccination status and vaccination coverage in Norway. Start date 1995.\\
* **NorPD**\\
//Norwegian Prescription Database
ReseptRegisteret//\\
An overview over all prescription drugs dispensed from pharmacies in Norway. Over-the-counter drugs are not included. Drugs used in hospitals, nursing homes and for animals are also included (but not on an individual level). Start date 2004. \\
* **HKR**\\
//Norwegian Cardiovascular Disease Registry\\
Hjerte-og karregisteret//\\
A registry of diseases of the heart and blood vessels. Start date 2012.\\
* **MoBa**\\
//Norwegian Mother, Father and Child Cohort Study\\
Den norske mor, far og barn-undersøkelsen//\\
A unique study of the causes of disease among mothers and children. Pregnant women were recruited from 1998 to 2008. Fathers were also invited. Biological material and questionnaire data have been collected at different ages since the 17th week of pregnancy, and will continue for years to come. 95 000 mothers, 114 500 children and 75 000 fathers participating. \\
More information (in Norwegian and english): https://www.fhi.no/studier/moba/

For more infomation on the other registries mentioned use the link on top "Overview of the mandatory national health registries".


==== Registries at Statistics Norway - Statistisk sentralbyrå (SSB) ====
Statistics Norway offers various services for extracting microdata and statistics. Most are freely available in StatBank Norway, but public authorities and researchers associated with approved research institutions can apply for access to microdata from Statistics Norway.\\
More information here (only in Norwegian):\\
https://www.ssb.no/omssb/tjenester-og-verktoy/data-til-forskning

* **FD Trygd**\\
Data on persons' social security status and social security conditions. Start date 1992.

===== Stored at TOP =====
According to the TOP concent TOP data can be connected to relevant information from the following public registries: Birth (MBRN/MFR), Perscription (NorPD/RR), Social security (FD Trygd), Vaccines (SYSVAK) and Cause of death (CoDR/DÅR) registries, National patient registry (NPR) and Statistics Norway's Family and Social Registry.

Information from several of these registries have been collected several times, currently we have stored the following:
  * **NPR** Last received in 2021, including data from 2008 -2020.
  * **KUHR** Last received in 2020, including data from 2006 -2019.
  * **MBRN/MFR** Last received in 2020. 
  * **CoDR/DÅR** Last received in 2020.
  * **NorPD** Last received in 2020.
  * **MoBa** Continous.  


Data is available through specific agreements, consult your CRU-leader if you want access.
For most registries data can only be accessed by people mentioned in the application, it is however possible to add people (contact the Database team).

If you want/need access to registry data not currently at TOP, it is possible to apply for data covered in the concent (either from a new registry or an update). This is however a time consuming prosess and you should start preparing for this as early as possible.


====Terms for making data from available====

These terms are based on terms received from the National Institute of Public Health (NIPH/FHI), but the same or similar terms will apply for all regestries.

  * The institution responsible for data for the project, Oslo University Hospital, is responsible for ensuring that all processing of personal data in the project complies with the requirements of the Personal Data Act and the GDPR. This includes assessing whether there is a requirement to conduct a privacy impact assessment (DPIA) before the processing of personal data begins.
  * The data responsible institution for the project must assess that the consent has been obtained in accordance with the requirements of the GDPR.
  * The information must only be used for the purpose stated in the application.
  * Everyone who has access to the data set has a duty of confidentiality in accordance with the Health Register Act § 17. The data controller for the project is responsible for ensuring that all employees who are to have access to the data set have been granted the necessary exemption from the duty of confidentiality.
  * Oslo University Hospital has to inform the owner of the registry in the event of significant changes in the project, such as change in data responsible institution, project manager or project duration.
  * The data material must be deleted no later than the end of the project. Written confirmation that the material has been deleted must be sent to the owner of the registry.
  * Information will be published on the registries' website that this project has gained access to data.
  * When publishing, the registries used must be stated as the source. In all publications, the official name or abbreviation of the register shall be included in the title or abstract text for the sake of PubMed searches.

Information on the official names and abbreviations of NIPH's registers:\\ https://www.fhi.no/div/datatilgang/retningslinje-for-referanse/

Furthermore the registries are not responsible for interpretations or analyzes of the data made by others.
