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Data access from health registries, health studies and biobanks

Genetic data from the Norwegian Mother and Child Cohort study (MoBagenetics)

MoBagenetics is a research infrastructure aiming to genotype all participants in MoBa, and offer access to this data using a secure analysis platform to approved research projects.

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As of today, all access will be granted through the Services for sensitive data (TSD) at the University of Oslo. By the end of 2018, MoBa aims for 150.000 samples genotyped, of these 46.000 randomly selected trios. Funding has also been secured for additional 30.000 samples, which are planned to be genotyped either late 2018 or early 2019 and we aim for completing genotyping of all available DNA samples in MoBa (239.000 samples) during 2019.

MoBa welcomes request from researchers to answer specific scientific aims, to access this infrastructure. Before applying for access to MoBagenetics, MoBa encourages researchers to read the following information and contact MoBa if any further information is needed.

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 41% of the pregnancies. The cohort now includes 285 000 participants, 239 000 of these has DNA available and 59 000 complete trios with DNA available.

General information of health and exposures are collected from questionnaires during pregnancy and onwards. Biological material have been collected from the participants. Blood samples were obtained from both parents during pregnancy and from mothers and children (umbilical cord) at birth.

MoBagenetics

The genotyping is a collaborative effort, performed in mainly three large research projects using slightly different platforms:

  • 33.000 samples (11.000 trios) on Illumina HumanCoreExome at Genomics Core Facility Trondheim (24.03.2018 – all completed) – PIs: Per Magnus, NIPH and Pål Njølstad, UiB
  • 27.000 samples (9.000 trios) on Illumina Global Screening Array at ERASMUS MC (24.03.2018 – 18.000 completed) – PI: Pål Njølstad, UiB
  • 90.000 samples (26.000 trios) on Illumina OmniExpress at deCODE(24.03.2018 – 44.000 completed) – PI: Ole Andreassen, UiO/OUS

The PIs mentioned above are, until 2025, to be invited to participate in any study using this genetic data, and MoBa expect all researchers to follow the guidelines from the Vancouver Convention regarding authorship. The number of collaborators and authorships should be agreed upon following a dialogue between the projects.

An important part of the data delivery is assuring high quality data for the researchers using the genotypes in downstream analyses. A group of researchers, previously experienced in quality control (QC) assessment of array data, has performed QC on the first data set mentioned above. This dataset consist of the following:

  • Raw data directly from the scanner (.idat)
  • Raw data exported from GenomeStudio
  • Quality controlled data
  • Additional documentation regarding the samples and data set

More information about this dataset, what files is available and how the quality control was performed is available upon request or when accessing the infrastructure.

MoBa is currently working, in collaboration with the two other projects, to generate similar datasets and information.

Access to approved MoBa questionnaire data will be delivered directly to each research projects Principal Investigator, based on the aim of their research’s projects.

Who can apply for access?

Any research group with a Principal Investigator affiliated with a Norwegian research institute can apply for access to analyze MoBa data. This means that research groups from non-Norwegian countries must find a collaboration partner in Norway to be able to use MoBa data. The Principal Investigator must have research experience, usually demonstrated with a PhD degree.

All projects must have an approval from The Regional Committee for Medical Research in Norway (REK) and comply with the EU’s General Data Protection Regulation (GDPR), and need to establish a project area at the Services for sensitive data (TSD) at the University of Oslo. Other approvals might also be applicable.

Access fee

The fee for accessing the MoBagenetics is calculated based on the costs of the infrastructure and storing of the data, facilitating access to structure and quality controlled data as well as development and management of the infrastructure.

Included in the price is access to, at any given time point, the maximum number of quality-controlled samples. Not included in the fee is the expenses linked to the projects own TSD project area and support, as well as the fee of access to MoBa questionnaire data and MoBa article fee. MoBa also expect the project to comprise the necessary competence to analyze the data.

For each projects with plans to publish three to ten articles, the access fee is 500 000 NOK. This price also includes using the data in meta-analysis if MoBa is informed. For more extensive projects, this must be agreed separately with MoBa in each case, and the MoBa Administration (MoBaadm@fhi.no) should therefore be contacted before sending an application. If a researcher only wants to publish one paper, a time limited access, for a specific research question, can be discussed with MoBa and may be granted at the cost of 25 000 NOK.

The price is subject to change when MoBagenetics is complete and a permanent infrastructure and administration model is in place.

How to apply for access

The following section describes the application process to gain access to MoBagenetics. The figure shows the main process and each box is described in more detail below the figure.

Mobagenetics.jpg
  1. Documents, all in English:
    • Approval (REK or similar) and the following REK approvals has to be referred to in the projects approval: 2014/1178/REK SØR-ØST B (Per Magnus), 2012/67/REK vest (Pål Njølstad) and 2013/2288/REK sør-øst C (Ole Andreassen)
    • Funding
    • Copy of approval with one, two or all of the contributing projects, if they are too participated in the study. If not, documentation of their consent but not participating must be obtained
  2. Submit the application, including relevant documentation, using the NIPH electronic application form
  3. Once a month the MoBa administration consider all applications received
  4. If the application is approved, the PI will receive a Data Access Agreement(DAA)
  5. TSD project area:
    • A: If the project does not have a TSD account, PI has to apply for this here
    • B: If the PI already has a TSD project area no action is needed
  6. PI returns the following information to MoBa (mobaadm@fhi.no):
    • Signed contract, form2 and billing information
    • Name(PXXX) of TSD area, expiration data for the TSD area, name and e-mail address for the TSD area administrator
  7. When MoBa receives your documentation(s):
    • MoBa data center (MorBarnData@fhi.no) will inform the PI about when to expect the release of phenotypic data and, if applicable, other data files
    • MoBa TSD personnel requests TSD to grant the project reading access to MoBagenetics and when obtained, informs the PI and/or the projects TSD administrator
  8. Access to MoBagenetics and, if applicable, phenotypic data granted and the research can start

Contact information

For more information or questions, please contact MoBa: