OPEN is helpful as a partner already in the initial phase of a register-based project and later when interconnection of data is to take place, for instance making use of our authorisation to remote access to data from Statistics Denmark. Costs in connection with extracts from external registers are borne by the project.
How do I start a register-based project in OPEN?
- Send an OPEN application form including required annexes and specification of which data is requested and from where
- A notification to the Danish Data Protection Agency under the collective permission held by the Region of Southern Denmark. You will find guidelines and forms for notification under the region's collective permission at OUH's website. For project affiliated to other hospitals in the region you may find contact information at SDU's website Research Infrastructure the Region of Southern Denmark.
How do I acess data from registries and databases?
Data from other OPEN projects
- OPEN establishes contact with the person responsible (licensee) for the project in question
- A written consent from the licensee for delivery of data from the already existing OPEN project must be available
- All approvals must be in place (e.g. Danish Data Protection Agency)
- OPEN will extract the data
Data regarding civil status, address, household, education, employment, income, public health allowances, drug prescriptions, hospital admissions etc.
- Fill out the application form for project approval in accordance with the data specifications and project description. OPEN will assist you before you send the application for approval. Read more about the creation of project and research on Statistics Denmark's website
National Patient Register, Cause of Death Register etc.
- You must fill in an online application form and a data description for Research Service at Sundhedsdatastyrlesen. Here you may find guidelines and application form. Some of these data sources are also available through Statistics Denmark, though there may be less detail for some data fields (e.g. truncation of procedure codes)
Clinical quality databases e.g. Danish Lung Cancer Register, Danish Society of Nephrology's National Register etc.
- Send an application for data extract to the steering committee responsible for the database in question and in accordance to the guidelines for scientific exploration of the database. You may find general guidelines for extracting data.
For further questions on OPEN Registry, please contact firstname.lastname@example.org