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  • Access to data from Norwegian Twin Registry


Access to data from Norwegian Twin Registry

The Norwegian Twin Registry (NTR) was established by the Norwegian Institute of Public Health (NIPH), Oslo University Hospital and the University of Oslo. The purpose of the registry is to facilitate the use of twin data in medical research and to contribute to the understanding of the causes of disease and good health.

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Illustrasjonsfoto: Colourbox.com

The Norwegian Twin Registry (NTR) was established by the Norwegian Institute of Public Health (NIPH), Oslo University Hospital and the University of Oslo. The purpose of the registry is to facilitate the use of twin data in medical research and to contribute to the understanding of the causes of disease and good health.

1. Purpose of the guidelines 

  • to contribute to research with high scientific quality
  • to contribute to the rapid publishing of important results from the study rapid publication of important results from the study
  • to make data for research purposes easily available

2. What is a twin registry sub-project?

A twin registry sub-project is a research project using data and biological samples from the NTR.

3. Access to data

Researchers who have an interest in using data for research purposes can apply for access to data. Any delivery of data will be considered as a sub-project in NTR. The applicant has to be affiliated with an institution with competence in conducting research projects that is willing to be responsible for a sub-project. Inexperienced researchers must have a scientific supervisor belonging to such an institution. All sub-projects must have a principal investigator with scientific responsibility for the project. For each sub-project, a contract will be written between the Norwegian Institute of Public Health and the relevant institution. A contract gives the right to study one or more research questions for a defined limited period of time.

4. Considerations to be taken into account when access to data is granted

The research question(s) must be in agreement with NTRs purpose. In addition, the following criteria apply:

  • Scientific quality and originality
  • The applicants scientific environment
  • Usefulness for preventive or curative medicine
  • Scientific, administrative, practical, and economical contributions to the planning and/or the collection of data in NTR
  • If the sub-project can enhance the quality of the NTR database, e.g. validation studies

5. Type of access granted

Access is granted to data from the NTR database. In addition, biological samples for specific analyses can be handed out according to the conditions mentioned under section 11.

Given the extensiveness of the database the delivery of data will be adjusted on a case to case basis. Only data without personal identifiers are handed out. No exclusive rights to the data are given. However, exclusive rights to publish on specific research questions for a limited period of time can be granted. Normally the limited time period is two years, but this period may be extended dependant on the complexity of the sub-project. Extension of this limited period can be applied for.

6. The decision process

The applications are received and controlled by the staff of the Norwegian Institute of Public Health, and are processed and approved by the board of NTR. In specific cases, outside experts can be consulted. Complaints about decisions can be made according to Norwegian legislation relating to public administration.

7. More than one applicant interested in the same research question

In situations where more than one researcher is interested in the same research question, the researchers will be encouraged to collaborate, either on analysis and publication or by dividing the area of interest between each other. In cases where these solutions are difficult, the application that meets most of the conditions mentioned above will be chosen.

8. What should be included in the application?

The applicant should specify the objectives, institution, responsible person, co-workers, title and purpose, and include a short description of the sub-project. The application should also contain a time schedule, a publication plan, and a budget. The dataset to be analyzed should be described.

The application shall also include the principal investigators CV with a list of publications for the last 5 years. Project title and the name of the principal investigator and research institution will be published on NIPH web-pages. This is thoroughly described in the application form.

9. Project description

Should be brief (max. 5 pages) and start with the background for the project and the reasons for the choice of research question. It should also state previous research in the field and specific contribution to this project. Each research question should be formulated in one sentence with individual sentences for sub-questions if necessary.
The specific dependent variables (outcome) applied for should be stated, as well as the independent variables (main exposure) and confounders (covariates).

10. Additional conditions for access to biological material

As opposed to data from questionnaires which can be reused, biological material is a limited resource. In addition to the above mentioned criteria, the following conditions apply:

  • The project has a research question that cannot be answered by using biological samples from other sources
  • The results from laboratory analyses should be reused for other scientific purposes
  • The amount of material to be used
  • Documentation from the laboratory that the specified analyses can be conducted with high quality.

Researchers from foreign research institutions must have a Norwegian research partner. Also of importance is the sub-projects contribution to Norwegian research in the relevant field.

Studies that need small amounts (micro methods) will be given priority. The choice of the number of samples to be analyzed must be accompanied by a statistical power calculation. The researcher must also document that it is analytically possible to answer the research question by analysis of biological samples from NTR, and by requested sample type and volume.

The samples that are handed out will only have laboratory serial numbers. The results of the laboratory analyses shall be returned to NTR. The data from the laboratory analyses will be available for other researchers 3 years after the results have been sent to the primary researcher.

11. Financial conditions

All sub-projects have to pay a fee to get access to data and biological material reflecting true costs to the NTR in providing the requested resources. Costs are decided on a project to project basis in agreement with NTR.

12. Rules for publishing

All manuscripts and abstracts must be sent to NTR (twin.registry@fhi.no) for review before they are submitted for publication. The NTR leader team will assess if scientific articles based on NTR data and biological material meet the conditions of the signed contracts. The Leader Team will have a 14 days deadline for comments. Results from sub-projects must not be mentioned or discussed publicly before they have been published in scientific publications or as abstracts. In case of contact with the media it must be made clear that results are from the NTR. NTR should be correctly mentioned and the presentation of data should be in line with the conditions given.

Standard acknowledgement to NTR:
“Data on… (relevant data elements)….were obtained from the Norwegian Twin Registry”.

NTR shall also be mentioned in the abstract text and as a key word

For the material and methods section the following references can be used:

Harris JR, Magnus P, Tambs K. The Norwegian Institute of Public Health twin program of research: an update. Twin Res Hum Genet. 2006 Dec;9(6):858-64.

Harris JR, Magnus P, Tambs K. The Norwegian Institute of Public Health Twin Panel: a description of the sample and program of research. Twin Res. 2002
Oct;5(5):415-23. Review.

Bergem AL. Norwegian Twin Registers and Norwegian twin studies--an overview. Twin Res. 2002 Oct;5(5):407-14.

NTR is not responsible for the scientific content in articles from external researchers.

13. Contents of agreement

After project approval a contract will be signed by both parties, NIPH (NTR) and applicant institution. The contract will contain rights and duties between the parties. Applicants are responsible for all necessary formal approval concerning the sub-project and transfer of data and biological samples.

14. Revision of guidelines

These guidelines are subject to revision