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Data access from health registries, health studies and biobanks

Research and data access from the Norwegian Mother and Child Cohort Study

On this page we have gathered relevant information for application for access to data from the Norwegian Mother and Child Cohort Study (MoBa) as well as other relevant information for MoBa-researchers.

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Many of the research projects in MoBa are performed by external researchers and groups from other national and international institutions. Guidelines, access to data and prices are the same for employees at the Norwegian Institute of Public Health as for other institutions. Please contact datatilgang@fhi.no if you require further assistance.

Protocol

Recruitment of participants ended in 2009 and the study is in a new phase. Here are the protocols for MoBa. Protocol 1 applies for the initial part of the study and describes the recruitment phase and is found in Norwegian and English. Protocol 2 describes the next phase of work in the study. It is only available in English and was last revised in October 2012.  

Access to data and biological material

Data from MoBa are available to all qualified researchers/research groups in Norway. Data are available to international researchers who are collaborating with a Norwegian researcher. As of 27th April 2015 new guidelines require that all research projects must be approved in advance by the regional committee for medical and health research ethics before any data can be accessed by the researchers. Applicants must follow the guidelines.

All enquiries about access to data should be sent to datatilgang@fhi.no.

Changes to MoBa access documents

The documentation for access to and use of data and biological material from MoBa for research purposes was revised in 2015. Previously, there was one combined document (September 2013) which has now been split into three:

Statutes MoBa explains the legal and organisatory framework for MoBa
Guidelines MoBa explains the application routines and how these are processed
Agreement MoBa explains the conditions for use of data and biological material from MoBa

What is in the agreement?
The agreement contains both the external framework (e.g. legislation, regulations, licences and consent) plus the conditions specified by the Norwegian Institute of Public Health for access to MoBa. The agreement contains:
(i) Project specific section for signature
(ii) Project specific attachment based upon the electronic application and decisions in MoBa
(iii) Financial provisions
(iv) Standard conditions for access and use of MoBa data, which are non-negotiable 

Approval of articles

All MoBa articles must go through an administrative approval from the MoBa management group to ensure that the analyses are performed according to the approved application and that MoBa is described correctly. Here is the checklist that should be sent in with the article.

Request for syntax files

We ask that syntax files that define the study population and the main variables are sent to MoBa. Please include a short verbal description for each main variable. Syntax files are sent to datatilgang@fhi.no. The files will be used only for the purpose of reproducing results, or for commenting on those results in a letter to the editor if needed.

Standard text and references to be used in publications

Title: MoBa should be made visible by including The Norwegian Mother and Child Cohort Study in the title, or the sub title of the publication. 

Acknowledgements section: We ask that the authors acknowledge the funding bodies and the participating families. The suggested text can be included as is or in a modified form:

The Norwegian Mother and Child Cohort Study is supported by the Ministry of Health and Care Services and the Ministry of Education and Research, NIH/NIEHS (contract no N01-ES-75558), NIH/NINDS (grant no.1 UO1 NS 047537-01 and grant no.2 UO1 NS 047537-06A1). We are grateful to all the participating families in Norway who take part in this ongoing cohort study.

Suggested standard text of MoBa for use in “Abstract” and “Material and Methods”

Abstract: This study is based on the Norwegian Mother and Child Cohort Study (MoBa).

Material and Methods: The Norwegian Mother and Child Cohort Study (MoBa) is a prospective population-based pregnancy cohort study conducted by the Norwegian Institute of Public Health. Participants were recruited from all over Norway from 1999-2008. The women consented to participation in 40.6 % of the pregnancies. The cohort now includes 114.500 children, 95.200 mothers and 75.200 fathers.

The current study is based on version (to be filled in) of the quality-assured data files released for research in (to be filled in).

If blood samples were used in the current study: Blood samples were obtained from both parents during pregnancy and from mothers and children (umbilical cord) at birth. 

Approvals: The establishment and data collection in MoBa was previously based on a licence from the Norwegian Data protection agency and approval from The Regional Committee for Medical Research Ethics, and it is now based on regulations related to the Norwegian Health Registry Act.

The current study was approved by The Regional Committee for Medical Research Ethics (references).

References for MoBa

  • Mandatory: 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. doi: 10.1093/ije/dyw029
  • If biological material is used: 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 Norsk Epidemiologi 2014; 24 (1-2): 29-35

Consortia manuscripts where MoBa contributes with metadata

If it is not possible to include the description of MoBa in the main manuscript, we ask that a minimum description of MoBa with main references should be included in the supplement. Authors contributing to consortia manuscripts with MoBa data must send us a copy of the published paper, to be included in our publication list.

Open data practice – Not applicable to MoBa data

Due to the MoBa consent, researchers cannot make data files available in connection with publication. However, researchers can provide information on where to apply for data sets. This is a suggested standard text to journals that want access to the research data:

Data Availability: The consents and approvals for MoBa do not allow storage of data in repositories. However, it is possible to apply for access to data-sets for replication from datatilgang@fhi.no. Ethical approval and relevant agreements will be required.

MoBa visual identity manual

The visual identity of the Norwegian Mother and Child Cohort Study (MoBa) ensures that MoBa is uniformly represented in different contexts. The identity should be recognisable and will contribute to all information being presented in a consistent way.

People who receive material and communicate with MoBa through different channels should be able to recognise the sender.

The visual identity manual is a tool for everyone who issues publications and other material on behalf of MoBa. The manual is intended for graphic designers and it is assumed that professional judgement and common sense will be applied, in addition to the rules and guidelines presented in this manual.

Some simple templates have been developed to ensure the correct profile is used by those who are not graphic designers, e.g. a presentation template and a letter template.

The examples of brochures and various publications included at the back of the manual are intended as recommendations. Use these for inspiration and as a guide for the impression we want to create with MoBa publications.

Everyone has a role to play in making sure that the visual guidelines are followed and that MoBa is well presented.

For more information about the visual identity, logo usage and templates, please contact the MoBa communications adviser at the Norwegian Institute of Public Health.

English versions of logos and templates

Electronic newsletter for researchers

We welcome new readers to the electronic newsletter from MoBa. This newsletter is aimed at researchers and other interested parties working with MoBa data and biological material.

The purpose of this newsletter is to facilitate communication between the MoBa-administration and the researchers, and to inform you about research possibilities within MoBa, new research findings and other news which may be of interest to MoBa-researchers. We plan to issue this newsletter about three or four times a year. Our hope is that you will contribute to the newsletter by sending us news to include in the newsletter.

Please contact nettredaksjon@fhi.no if you want to subscribe to the newsletter.