Access to data and biological material from the Norwegian Mother, Father and Child Cohort Study (MoBa)
On this page we have gathered relevant information for researchers applying for access to data from the Norwegian Mother, Father and Child Cohort Study (MoBa)
Note! From March 15 2023 variables from the Medical Birth Registry of Norway (MBRN) will no longer be available through MoBa.
The Norwegian Mother, Father and Child Cohort Study (MoBa) is one of the world's largest health surveys, which follows approximately 95,000 mothers, 75,000 fathers and 114,500 children and youths. The purpose of MoBa is to generate knowledge about serious diseases so that we can better prevent and treat them. MoBa has its legal basis in “Forskrift om befolkningsbaserte helseundersøkelser” (Lovdata.no).
In MoBa, we have questionnaire data, genomic data and biological material that can be used in research. Below you will find important information about the requirements needed to gain access to data from MoBa.
Important information for applicants
The institution responsible for the research where data from MoBa is used is required to make sure all processing of personal data is done in accordance with The Personal Data Act (personopplysningsloven) and GDPR. This includes assessing whether performing a DPIA is necessary before the processing starts.
Applicants who applies for access to data and/or biological material from MoBa must document that they have a legal basis for processing.
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. You can find protocols and form of consent here:
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.
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.
General information about MoBa's protocols, access documents, variable lists, price list, guidelines for articles etc. can be found on the following page:
MoBa does not provide exclusivity. Information about ongoing MoBa-projects can be found on the following page:
Data received from MoBa or new data collected may not under any circumstances be uploaded to public repositories or databases.
If you are planning to apply for access to data from MoBa, we recommend that you read the following articles before applying:
Magnus P, Birke C, Vejrup K, Haugan A, Alsaker E, Daltveit AK, Handal M, Haugen M, Hoiseth G, Knudsen GP, Paltiel L, Schreuder P; Tambs K, Vold L, Stoltenberg C. Cohort Profile Update: The Norwegian Mother and Child Cohort Study (MoBa). Int J Epidemiol 2016; 45:382-8.
Liv Paltiel, Anita Haugan, Trine Skjerden, Kari Harbak, Siri Bækken, Nina Kristin Stensrud, Gun Peggy Knudsen and Per Magnus. The biobank of the Norwegian Mother and Child Cohort Study – present status Nor J Epidemiol 2014; 24 (1-2): 29-35.
Applications are submitted via https://helsedata.no/forvaltere/folkehelseinstituttet/moba/ (external website). Norwegian electronic ID is needed to log in.
Only complete applications are processed. A complete application contains:
Which issues are to be studied.
- Linkage to other data sources, if applicable, including a flow chart for linkage.
The legal basis for using the data in accordance with Articles 6 and 9 of the GDPR.
If MoBa is the starting population for the study, our assessment is that the legal basis for using data from MoBa is the following: Art. 6 no. 1 letter e and art. 9 no. 2 letter j, with supplementary legal basis in §§ 8 and 9 of The Personal Data Act (personopplysningsloven).
Research protocol / project description.
Completed variable list.
Application to and approval from the Regional Committees for Medical and Health Research Ethics (REC), as well as any temporary decisions and change notices.
Copies of approvals from other data owners, if applicable.
If the project involves data transfer to countries outside the EU/EEA, it is necessary to document an adequate level of protection, in accordance with the GDPR.
Note that there are special requirements for applications for biological materials, applications for projects planning their own data collection and applications for genomic data from MoBa. Here are links for more information:
The MoBa administration normally spends 3-5 weeks processing applications. The time is calculated from the time all necessary documents are received.
Please note that follow-up questions may be asked during the processing of the application which must be clarified before the application can be assessed. The faster a response is received, the faster the application can be processed.
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.
Agreements and decision letters
If the application is approved, MoBa will prepare an agreement or issue a decision letter regarding access to data and/or materials from MoBa. Both an agreement and a decision letter contains terms and conditions for access to data from MoBa. An agreement must be signed by the PI and by the person responsible for the budget.
Significant changes after the agreement has been signed or a decision letter has been issued will result in a renewed processing of the application.
Breach of terms and conditions will be handled in accordance with MoBa's routines for deviations and may possibly lead to a reversal of the decision or breach of agreement with MoBa.
Information about projects on MoBa's website
After an agreement has been made or a decision letter has been issued, information about the project may be published on NIPH's website, including title, name of project manager, institution responsible for research, popular science summary and keywords.
Access to data and biological material from MoBa will be invoiced in accordance with the current price list.
Changes to approved applications
Application for project changes or extension of ongoing projects, 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.
Information about the legal basis for using the data in accordance with Articles 6 and 9 of the GDPR
Completed variable list, if applicable.
Please refer to the PDB-number of the project.
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, contact firstname.lastname@example.org 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.
PDF-version of the published article is to be sent to email@example.com.
Letter of support
If there is a need for a letter of support from MoBa, for e.g. applications for funding, this can be issued on request. Contact academic leader in MoBa, Ragnhild Eek Brandlistuen: Ragnhild.Eek.Brandlistuen@fhi.no. Please note that such a letter is not legally binding for MoBa.
Case managers in MoBa (MoBaadm@fhi.no):
- General questions about the use of MoBa for research
- Wants to discuss the possibility of a research project
- Commercial actors
Data managers in MoBa (MorBarnData@fhi.no):
- Questions related to what data and variables are available in MoBa
- Questions about linkage to other data sources
- Questions about available sample material