Case 10: Data from the national clinical register at the danish clinical quality program

Cases are examples of questions and inquiries we receive in the Guidance Function, which we would like to share for inspiration.

A researcher contacted the Guidance Function with the wish to obtain access to a database containing data about rare diseases in the Danish population. The researcher needed to know where data was located and who to contact to obtain access.

Information about diseases and treatment procedures of Danish patients can be found in the databases at the National Clinical Registers at the Danish Clinical Quality Program (in Danish: Regionernes Kliniske Kvalitetsprogram, RKKP). The primary purpose of RKKP is to ensure a continued improvement in the utilization of the registries in a clinical as well as managerial, and research oriented sense. RKKP supports about 85 databases, which can be grouped into three categories: 1) Heart, Surgery and Emergency Care, 2) Cancer and Cancer Screening, and 3) Psychiatry, Gynecology/Obstetrics and Chronic Diseases. Besides their quality program, RKKP provides data for research and surveillance purposes. The program is exempt from patient consent to data-collection. Read more about the rules for access to the RKKP’s databases here (link in Danish): Data til forskning – RKKP

In this case, we helped the researcher identify the correct database to obtain the data from. We forwarded contact information on the database manager and informed about the general rules for data access at RKKP.

Please feel free to contact the Guidance Function if you need guidance in your research project. Our services are free of charge.

The Guidance Function offer first-level support for Danish and international researchers in need of help to navigate the requirements and processes surrounding research projects.

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