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Access to data

Guidelines

The Danish Twin Registry is a research register with data available for well-defined scientific research projects that have been/will be approved by the Scientific Board of the Danish Twin Registry as well as by relevant institutions (e.g. the Committee on Health Research Ethics, the Legal Services of applicant’s institution).

In general, all project must be in accordance with the General Data Protection Regulation (GDPR).

To enhance data security, your data set will generally be made available to you through a secure connection to our server at University of Southern Denmark.

If you have never been in contact with any of the researchers at the Danish Twin Research Center and you want to carry out a scientific research project using data from the Danish Twin Registry, we encourage you to send a query to tvilling@health.sdu.dk. Please, attach a short abstract describing the topic and data of interest and a short CV as well.

If the topic of your project is pre-approved you will be asked to fill in the official application form that should also be forwarded to tvilling@health.sdu.dk, including a detailed project protocol, relevant approvals (if already obtained) and documents. Please, carefully read the application guidelines and terms in the end of the application form.


Application form

When we receive your application, it will be handed over to the Scientific Board of the Danish Twin Registry, who will handle it at the next upcoming monthly meeting.

If the project is fully approved, the Scientific Board appoints a contact person from the board. Usually, this person will be a member of the project group.

You can expect an application processing time of 4-6 weeks from the date we receive the official application form.

The fees for carrying out a research project using data from the Danish Twin Registry are covered by the project team. This means that you should allow for such fees when drafting your project budget.

The price for your dataset will depend on the time our data managers spend on assisting you and constructing your dataset. Usually, the price will be DKK 1,200 per hour.

In addition, there is an annual fee of DKK 5,000 if you work on our server, including storage space.

For each project, the project team and the management of the Danish Twin Research Center will agree on the fees.

Before submission, all manuscripts must be approved by the contact person (Scientific Board member). The contact person is under obligation to comment on manuscripts within a reasonable time limit.

A copy of the publications, including the abstracts, resulting from the research project must be forwarded to the Danish Twin Research Center.

Acknowledgements

The following acknowledgement line must be used on all reports, publications, and other materials resulting from use of data from the Danish Twin Registry:

Data used for this research was provided by the Danish Twin Registry, University of Southern Denmark. The findings, opinions and recommendations expressed therein are those of the author(s) and are not necessarily those of the Danish Twin Research Center.

The Danish Twin Registry and the Biobank of the Danish Twin Registry have been approved by SDU RIO (SDU Legal Services) and the Committee on Health Research Ethics. The participants were enrolled by informed consent.

SDU RIO approvals:
  • The Danish Twin Registry, SDU RIO notification no. 10.585 
  • The Biobank of the Danish Twin Registry, SDU RIO notification no. 10.754