1. Support for Nordic research projects
in managing sensitive data
The Nordic Tryggve project
https://wiki.neic.no/Tryggve
2. Tryggve – supporting biomedical research in Nordics
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• Tryggve is a Nordic project that develops services for cross-border
use of sensitive biomedical data for research
– Partners and funders are NeIC and ELIXIR Nodes in Denmark, Finland,
Norway and Sweden
• The project supports genuine research projects through a
continuous call for use cases
• Use cases will receive e.g. support on legal and ethical questions,
access to secure e-infrastructure, and expert assistance
4. What is a Tryggve use case
• Tryggve team wants to support researchers in taking the secure
data services into use, and thereby to achieve results faster and
safer
– Tryggve use case is the concrete means of doing this!
• Use case aims to solve real-life issues in data management and/or
to provide state-of-the-art research environment for sensitive
research data
• Use cases can be proposed at any time via Tryggve’s web site:
https://wiki.neic.no/wiki/Tryggve_Getting_Started
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5. Suitability for Tryggve use case
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Tryggve use
case
Research
involves
personal
data
Collaboration
within Nordics
6. 6
Tryggve helps research projects to achieve their goals
Collecting
research data
Storage and
processing
Publication
and archival
• Support in
meeting legal and
ethical
requirements
• Secure data
transfer
• Secure storage
and computing
environment
• Share data with
your colleagues
• Software
installations
• Access to data
archives
• Secure data
transfer
7. Collecting and moving research data
• Support in the process of accessing and moving the data
• Secure data transfer, based on secure FTP
• Data can be moved between Nordic countries or from elsewhere, for
example external repositories
• Support in meeting legal and ethical requirements
• Looking into specific questions, such as moving data across countries
• Questions around merging research data from different sources
• Professional evaluation of ethical and legal aspects
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8. Storage and processing
• Secure data analysis platforms
• Project-based secure storage capacity
• Efficient and secure processing environments
• Tryggve offers environment, researcher brings the data
• Variety of platforms offering flexibility to handle different use cases
• Offering includes the following systems: TSD, Mosler, ePouta,
Computerome
• Share data with your colleagues
• Control over the data stays with the user
• Access to the data can be easily given to colleagues
• Software installations
• Support in moving computation where the data is
• Guidance in installing the needed software
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9. Publication and archival
• Access to data archives
• Support in moving data to international repositories when the analysis
is done and data sets have been prepared for publication
• Contacts to national archival services
• Secure data transfer
• Secure transfer to external repositories
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10. In a nutshell
• The proposers of accepted use cases will receive
• Expert assistance from Tryggve
• Access to secure data processing environments during the use case
• Support in legal and ethical questions
• Opportunity to influence future developments as an early adopter
• All this will be provided free of charge for the use cases
• The amount of computing or storage resources is subject to service owner’s
decision
• What we expect from researchers involved in a use case
• Discussion with Tryggve team to specify the needs and to give input
• Public abstract of the case
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11. Selection process
• Proposals can be submitted at any time
• Main requirements for a use case proposal:
– Involves use of sensitive data
– Includes collaboration from more than one Nordic country
• The proposal is analysed by the Tryggve project staff
– This step is done interactively with the proposers
– The project Reference Group may be consulted for recommendations
• The project Steering Group makes final decisions
• Key criteria for acceptance are the availability of expertise and
resources at the project
– Decisions can be done within a few weeks
• More details at: https://wiki.neic.no/wiki/Tryggve_Getting_Started
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12. Success story:
Processing sensitive data for schizophrenia research
• Research on the gene-environmental interaction and causes for
schizophrenia, led by professor Patrick Sullivan, Karolinska Institutet.
• Large samples are needed in order to understand the interactions
between environment and genes. These are available in the Nordic
countries because of long tradition for national registers.
• Legal and ethical issues, ensuring the privacy of subjects, have to be
taken into consideration when merging data.
– Tryggve project has provided legal expertise and professional evaluation of the
legal aspects of transferring the data sets between Nordic countries.
• Secure place to conduct harmonized analyses of gene-environment
interactions and risk of schizophrenia is crucial.
– Professor Sullivan, with the assistance of Tryggve security experts, is now
combining data sets from Denmark, Norway, Sweden and Estonia to create a
joint data set with a total of 6000 cases and 8750 controls.
• Read more: http://www.inthefieldstories.net/processing-sensitive-data-for-
schizophrenia-research/
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