Return of data and generated variables from research projects to MoBa
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Data and analytical results from biological material from the Norwegian Mother, Father and Child Cohort study (MoBa) generated in research projects must be sent (returned) to MoBa as soon as the analyses are completed. Data collected in projects and generated variables must be transferred to MoBa in accordance with the agreement entered into with MoBa. The project manager is responsible for ensuring that the data are transferred.
Analytical data and metadata
All analytical data procured from all analysis of MoBa biological material with associated metadata must be returned to MoBa. The legal basis for the return of analytical data is regulated in the Norwegian Health Registry Act (‘Forskrift om befolkningsbaserte helseundersøkelser’) §5-1 and the agreement entered into between MoBa and the project.
Keys for linking the analytical data with MoBa questionnaire data will be released when the data and metadata have been transferred to MoBa.
To ensure the reliability and sustainable reusability of these data (in accordance with FAIR principles) the following data must be returned to MoBa (if applicable):
- Raw data and quality-controlled data (using the RetrivelDetail-ID to label data)
- Units of measurement for each analysis measured (e.g. each metabolite)
- Limits of detection or limits of quantification for each measurement
- Detailed information on cases and controls
- Detailed information on sample preparation and methods for data acquisition.
Remaining biological material
After finalizing the approved analytical work, including quality control, or when the MTA between the project and MoBa expires, whichever comes first, any remaining biological material at the laboratory shall be destroyed and any remaining analytical data shall be deleted. The laboratory may be asked to provide a written confirmation that any remaining biological material has been destroyed. Further, the laboratory is obliged to promptly and appropriately destroy specific data on MoBas request if MoBa makes such request based on participants withdrawing their consent.
Data collected in research projects and generated variables
Data collected from MoBa participants in research projects and generated variables based on MoBa data must be transferred to MoBa in accordance with the agreement between MoBa and the project. The data must be accompanied by a document describing variables (variable documentation) and procedures for any investigations performed.
Data transfer
The procedure for transferring data will be agreed upon with MoBa. Contact the biobank (biobank-bioretrieval@fhi.no) to arrange data transfer. Do not send analysis results to the biobank by email.
- Smaller files containing analysis results may be sent by email and must be encrypted to prevent unauthorized access by anyone other than the recipient. The password must be transferred separately from the analysis results.
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Information on transferring large data files (e.g. GWAS, EWAS etc.) to MoBa may be found here: Returning data to NIPH