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Who can use OPEN Registry?

OPEN Registry is relevant for you, who:

  • Is planning a register based research project either as a self-standing epidemiological research project or as a supplement to the clincal data, which you have collected on a given cohort
  • Wishes specific help to get started planning and conducting a register based research project
  • Needs help gaining access to data from Statistics Denmark or (Danish Health Data Authority)
  • Needs help doing  an extraction specification

Why use OPEN Registry?

OPEN Registry offers:

  • To help make a research idea more specific
  • Guidance on register access and which registers and table are relevant for your project
  • Guidance on extraction specification and perusal before application (to facilitate the application process)
  • Guidance on preparation and management of data

How can you use OPEN Registry?

OPEN Registry can inform you of the unique opportunities which the Danish registries hold and how to gain access.  OPEN Registry can advice you on which registries are available and how to best use them for research.

OPEN Registry can also be used as for sparring on how a research idea can become a usable data set with the help of excisting Danish registries and data bases. Please conctact us early in the process, even though you only have an idea.

 

Access to register data?

As a researcher, you can gain access to the Danish registries at Sundhedsdatastyrelsen and Statistics Denmark.

 

Sundhedsdatastyrelsen  is responsible for different health registries which contain data related to the health of the population  and the services of the health system.  Statistics Denmark also offers access to the individual health registries but also to data on demography, socio-economic data (e.g. income and level of education), labour data, social data and data on accommodation and estate on personal level.

 

The difference between Sundhedsdatastyrelsen and Statistics Denmark

The two main differences between Sundhedsdatastyrelsen and Statistics Denmark are:

  • Sundhedsdatastyrelsen contains the newest data of the big health registries (Statistics Denmark are behind by aprox. one year)
  • Only at Statistics Denmark, you can access socio-economic data

OPEN Registry will guide you to more differences and to what is most relevant to your project.

Authorisation

To access register data at Sundhedsdatastyrelsen or Statistics Denmark, you need to apply through a research unit which holds an authorisation. OPEN will help your apply for an authorisation for Sundhedsdatastyrelsen or Statistics Denmark for your research unit, if you do not have one already.

 

Costs at Sundhedsdatastyrelsen and Statistics Denmark

Costs regarding data extraction from external registries at Sundhedsdatastyrelsen and Statistics Denmark will be held by the research project.

 

OPEN Registry’s own research data bases

By using central health register data, OPEN Registry has established course based research data bases in the subjects of diabetes, cancer and inflammatory bowel disease (IBD) which is available for specific projects. Se more at "Research at OPEN”.

 

What can OPEN registry help me with and how?

OPEN Registry offers guidance in the use of the Danish registries, content, data extraction, extraction specifications and handling of register data. Guidance includes 20 hours free of charge. You also have the opportunity for more thorough involvement e.g. help for data management and analysis - this will be invoiced by the hour after further agreement with OPEN. Co-authorship according to the Vancouver rules.

 

OPEN Registry continously holds courses on register based research, focusing on how register data can be used to clarify specific research thesises.

Guidance is done by e-mail, phone or a scheduled meeting. Please e-mail to open@rsyd.dk if you need assistance for your register based research project.  Please attach relevant information, specified at "Application to OPEN".

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