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Access to data and biological material from the Norwegian Mother, Father and Child Cohort Study (MoBa)
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MoBa is a health survey with unique health data and biological material.
Special information for applications for biological material, projects with own collection and application for access to genetic data can be found on separate pages:
Important information for applicants
Disclosure of data from MoBa is currently delayed. More information can be found in this article (in Norwegian): Utleveringen av helsedata er betydelig forsinket.
Health data and biological material from MoBa can only be disclosed if there is a legal basis for the use of the information. Applicants who wish to borrow information from MoBa must document that they have a legal basis for processing. All use of data and biological material from MoBa is subject to Norwegian law. MoBa is based in forskrift om befolkningsbaserte helseundersøkelser (Lovdata.no).
The project research question(s) must be within the purpose of MoBa and the participants’ consent. The purpose of MoBa is described in the protocols.
- Principal investigator (project leader, PI) must have research competence corresponding to a doctoral degree (PhD) and must be affiliated with a Norwegian research institution.
- Project employees with a location outside Norway shall only be given access to data via a secure access solution, for example the Service for Sensitive Data (TSD) at UiO.
- MoBa does not provide exclusivity.
- Maximum duration of projects is 5 years. Any extension can be applied for (see section on changes to approved applications).
- Standard variables from the child's record in the Medical Birth Register (MFR) can be handed out together with data from MoBa without a separate application to MFR.
- MoBa obtains consent for continued participation in MoBa from the children (2nd generation). This work will continue until all children are 18 years old and may influence the data and biological material to which access is given.
General information about MoBa's protocols, access documents, variable lists, price list, guidelines for articles etc. can be found on the following page:
Information about previous applications to MoBa and ongoing projects can be found on the following page:
The institution responsible for the project that borrow information from MoBa is responsible for ensuring that all processing of personal data in the project complies with the requirements of the new Personal Data Act and General Data Protection Regulation (GDPR). This includes assessing whether there is a requirement to carry out a privacy impact assessment (DPIA) before the processing of personal data begins.
Application form and application content
Applications are submitted via Helsedata.no. Norwegian electronic ID is used to log in.
- Application form on helsedata.no (external website)
Only complete applications are processed. A complete application contains:
- Completed application form
- Research protocol / project description
- Information on issues to be studied
- Information about planned publications
- Completed variable list or biological material form, if applicable
- Information on linkage between data sources, if applicable
- Application to and approval from the Regional Committees for Medical and Health Research Ethics (REC), as well as any temporary decisions and change notices
- DPIA or justification for why DPIA is not necessary, anchored in the institution responsible for research with information about the legal bases for using the data in accordance with Articles 6 and 9 of the GDPR
- Copies of approvals from other data owners for connection to other data sources, as well as a linkage flow chart, if applicable
The MoBa administration normally spends 3-5 weeks processing applications. The time is calculated from the time all necessary documents are received.
Delivery of data takes place in dialogue with the data unit. The expected processing time from the agreement / decision until the disclosure of data is normally between 4 and 5 weeks. The time is calculated from the data manager has received everything necessary to make data available, such as linkage keys.
During periods of high demand and if the application is complex (for example linkage between several different sources), increased processing time will have to be taken into account, both for processing the application and delivery of data. MoBa recommends all applicants to apply well in advance.
If the application is approved, MoBa will prepare an agreement that must be signed by the PI and by the person responsible for the budget, or MoBa will issue a decision letter. Significant changes after the agreement has been signed or a decision letter has been issued will result in a renewed processing of the application.
Access to data and biological material from MoBa will be invoiced in accordance with the current price list.
Right of appeal
Pursuant to Chapter IV of the Public Administration Act, decisions on the disclosure of data may be appealed. A possible complaint is sent to the National Institute of Public Health. If the department does not reverse the decision, the appeal is forwarded to the Ministry of Health and Care Services for a final decision.
Changes to approved applications
Application for change of project or extension of ongoing projects that were started before July 2018, must be submitted via a form on helsedata.no.
- MoBa recommends that an application for an extension be sent at least 3 months before the end date.
- The end date in the MoBa agreement or decision letter is the current one if this deviates from the end date set at REK.
The following must be attached to the change application:
- Research protocol / project description where the changes are described, preferably as tracked changes or marked clearly with a colour.
- Copy of REK application and REK approval, as well as any temporary decisions and feedback as well as change notifications.
- Approved Privacy Impact Assessment (DPIA) or justification for why this is not necessary, with documented anchoring in the research institution.
- Information on legal basis for treatment according to Articles 6 and 9 of the GDPR.
- Completed variable list, if applicable.
A possible change could mean that a new agreement must be entered into with MoBa or that a new decision letter is issued.
For minor project changes in projects started after July 2018, contact for guidance.
Indication of source when publishing
All publications and presentations that use data from MoBa must state MoBa as a source in accordance with MoBa's guidelines for publication.
Articles must be sent to before submission to the journal. MoBa does not conduct a scientific review.
Case manager in MoBa ():
- General questions about the use of MoBa for research
- Wants to discuss the possibility of a research project
- Commercial actors
Data manager in MoBa ():
- Questions related to what data and variables are available in MoBa
- Questions about linkage to other data sources
- Questions about available sample material