In order to use data from a Swedish national quality registry for research purposes, approval from the Swedish Ethical Approval Authority is required. The research aims have to be clear and specific, and the required data has to be precisely specified. Establish contact with the registry owner in the first place. When contact is established and the project is approved, an application to UCR for data disclosure can be made. Application forms can be downloaded from: Documents and forms
Applications are reviewed for clarity, aims and feasibility in the research group for the registry concerned.
Projects involving commercial companies require a three-party agreement between the registry, the research organization and the company. Publications that use data from a national quality registry shall state the source of the data in the methods section. It is generally recommended that a person familiar with the registry is included in the research project to be able to explain how data in the registry is obtained. It is important that the registry is kept informed of publications that use data derived from the registry.
Quality registry data is used primarily for statistical analysis of healthcare activities and for follow-up of quality of care. This doesn’t require approval from the Ethical Approval Authority.
Download the application form from: Documents and forms
More information may be found at: National Quality Registries
UCR charges for the time required to process the application and to manage the actual data extraction. The current rate is 1100 SEK per hour excluding tax. Requesting data from a registry managed by UCR implies acceptance of the invoice conditions. Most requests take between 10 and 40 hours, but more complex requests may take longer.
Special invoice routines apply for data from the registries Swedvasc and SPOR.
Link to representative: www.ucr.uu.se/sv/kontakt