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Data Access

One of the purposes of the Norwegian Renal Registry (NRR) is to contribute to research and quality improvement projects. If you wish to use data from the registry, please contact the Director (Anders Åsberg, anders@nyreregister.no). Applications will be processed on a rolling basis by the registry to determine whether the project is consistent with the registry’s purpose, protocol, and statutes.

Application

Please contact the Director (Anders Åsberg, anders@nyreregister.no) to discuss which variables are relevant to your project. We are happy to explain which variables are available from different time periods and to discuss what may be relevant to include from the registry in relation to your specific research questions.

We encourage you to discuss data access with us early in the project process. However, to avoid duplication of work, we ask that you wait to request the actual data extract until you are ready to carry out the analyses. We promise a short waiting time for data, provided we have established a good plan for data delivery together.

There is no separate application form for obtaining data from NRR, but as a minimum we require:

Publication

Publication shall only take place in accordance with the research question and purpose stated in the application/protocol for data access. Upon publication — understood here as all public disclosure of research results or other compilations — it must be made clear that the data originates from the Norwegian Renal Registry. This also applies to press releases, popular science articles, and search terms in public publication databases or similar.

For scientific publication, the Vancouver rules shall apply to co-authorship. It is encouraged that a representative from NRR is invited as a co-author.

Acknowledgement

NRR must be acknowledged in publications by being mentioned in, for example, the methods section, acknowledgements, and keywords.

Suggested text for use:

English: The Norwegian Renal Registry (NRR) is a national medical quality registry. The registry includes patients undergoing biopsy for investigation of possible kidney disease, patients with severe kidney disease, islet cell replacement therapy and living kidney donors. Oslo University Hospital HF has the administrative and data processing responsibilities.

Norwegian: Norsk nyreregister (NNR) er et nasjonalt medisinsk kvalitetsregister. Registeret inkluderer pasienter det blir tatt biopsi av for utredning om mulig nyresykdom, pasienter med alvorlig nyresykdom, øycelleerstattende behandling og levende givere av nyre. Oslo universitetssykehus HF har administrativt og databehandlingsansvar.

Dissemination via the Registry Website

All publications (e.g., quality improvement reports, master’s theses, articles, posters, conference presentations, and popular science articles) based on data from NRR shall be continuously sent to the registry for registration and publication on the registry’s own website.