Support for Nordic research projects
in managing sensitive data
The Nordic Tryggve project
https://wiki.neic.no/Tryggve
Tryggve – supporting biomedical research in Nordics
2
• 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
Use cases
3
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
4
Suitability for Tryggve use case
5
Tryggve use
case
Research
involves
personal
data
Collaboration
within Nordics
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
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
7
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
8
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
9
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
10
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
11
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/
12
Contact
13
Project Manager:
Antti Pursula
antti.pursula@csc.fi
Website:
wiki.neic.no/Tryggve
Local contact points:
Denmark: Ali Syed (DTU)
alisyed@cbs.dtu.dk
Finland: Antti Pursula (CSC)
antti.pursula@csc.fi
Norway: Francesca Iozzi (UiO)
m.f.iozzi@usit.uio.no
Sweden: Niclas Jareborg (NBIS)
niclas.jareborg@bils.se

Tryggve support for-research

  • 1.
    Support for Nordicresearch projects in managing sensitive data The Nordic Tryggve project https://wiki.neic.no/Tryggve
  • 2.
    Tryggve – supportingbiomedical research in Nordics 2 • 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
  • 3.
  • 4.
    What is aTryggve 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 4
  • 5.
    Suitability for Tryggveuse case 5 Tryggve use case Research involves personal data Collaboration within Nordics
  • 6.
    6 Tryggve helps researchprojects 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 movingresearch 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 7
  • 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 8
  • 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 9
  • 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 10
  • 11.
    Selection process • Proposalscan 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 11
  • 12.
    Success story: Processing sensitivedata 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/ 12
  • 13.
    Contact 13 Project Manager: Antti Pursula antti.pursula@csc.fi Website: wiki.neic.no/Tryggve Localcontact points: Denmark: Ali Syed (DTU) alisyed@cbs.dtu.dk Finland: Antti Pursula (CSC) antti.pursula@csc.fi Norway: Francesca Iozzi (UiO) m.f.iozzi@usit.uio.no Sweden: Niclas Jareborg (NBIS) niclas.jareborg@bils.se