The Tryggve project facilitates cross-border biomedical research by providing secure computing services across the Nordic countries. These services allow sensitive human data to be analyzed while protecting individual privacy through secure data storage, transfer and computing environments. The goal is to enable research collaboration while preventing unauthorized access to personal health data.

1. NEIC TRYGGVE – NORDIC SERVICES FOR SENSITIVE
DATA
Antti Pursula, antti.pursula@csc.fi
https://wiki.neic.no/tryggve

2. USE OF HUMAN DATA
IN BIOMEDICAL RESEARCH HAS GREAT POTENTIAL
PERSONALIZED MEDICINE
CURE OF DISEASES
IMPROVED LIFE QUALITY
Data is collected by:
 Biobanks
 Research institutes
 Large genome studies
 Register organizations,
 Hospitals,
 Personal health apps, etc.
Society benefits when
these data collections
are made available
for research!

3. PROTECT PRIVACY OF THE INDIVIDUAL
Research use of health data requires:
 Data protection
 Secure data transfer
 Secure analysis environments
 Ethical considerations
 Effective legislation
CHALLENGE IS TO PREVENT NON-AUTHORIZED USE OF DATA
WHILE UTILIZING THE DATA FOR THE BENEFIT OF SOCIETY AND INDIVIDUALS
Health and well-being data on
humans is sensitive, personal
data that needs to be protected,
even after de-identification

4. TRYGGVE PROJECT
COLLABORATION FOR SENSITIVE BIOMEDICAL DATA
 Project aims to strengthen biomedical
research by facilitating use of sensitive
data in cross-border projects
 Partners and funders are NeIC and ELIXIR
Nodes in Denmark, Finland, Norway and
Sweden
 3-year project with volume of ca. 100 PMs
/year (ends in Oct 2017)
 Project will build on strong existing
capacities and resources in Nordic
countries

5. MOBILITY
Enhancing cross-border mobility of:
data, users and analysis pipelines
ACCESSIBLE
Services for sensitive data should be
accessible to users across Nordics
regardless of their location
PRAGMATIC APPROACH
Implement solutions that support
various use cases and varying local
terms and conditions
TRYGGVE TARGETS
IN A NUTSHELL

6. SECURE COMPUTING
AND DATA ENVIRONMENTS
Tryggve service development relies on
secure computing and data environments
at ELIXIR Nodes at the participating
countries
TSD 2.0 service at USIT
Mosler service at NBIS
ePouta secure cloud at CSC
Computerome at DTU
SECURE CLOUD
Infrastructure for data and computing
(ePouta, Computerome)
SECURE REMOTE DESKTOP
backed up with computing resources
(TSD, Mosler, Computerome)

7. SECURE SYSTEMS
THE USER STAYS IN CONTROL
TAKING INTO USE EXTERNAL SECURE SERVICE DOES NOT IMPLY
TRANSFERRING THE CONTROL OVER THE DATA TO THE PROVIDER!
Where the data is analyzed or stored and who
has the control over the data are different things
Service providers offer secure environment
for storing and analyzing their data
Data handler contracts define the roles

8. GETTING STARTED
USING THE TRYGGVE SERVICES
 Aimed for Nordic
research teams
 Backed by ELIXIR Nodes
and NeIC
CURRENTLY ACTIVE USE CASES
Use of the systems not limited
To Nordic countries!
CALL FOR NEW USE CASES
CONTACT INFORMATION TO SERVICES ON THE TRYGGVE WEB
SITE
 Trans-Nordic Gene-
Environment Analyses in
Schizophrenia
 Scandinavian Genetics
Collaboration for Olink
Biomarkers

9. CASE EXAMPLE ON TRYGGVE SUPPORT
FOR A USE CASE
PROCESSING SENSITIVE DATA FOR
SCHIZOPHRENIA RESEARCH
More info and interview of Prof. Sullivan at
http://www.inthefieldstories.net/processing-
sensitive-data-for-schizophrenia-research/
 Research on the gene-environmental
interaction and causes for
schizophrenia, led by professor
Patrick Sullivan, KI.
 Large amount of samples are
available in the Nordic countries.
 Secure place to conduct harmonized
analyses 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.

10. FUTURE VISIONS
FOR A COLLABORATIVE EFFORT
Create Data Platforms that are
internationally interoperable
 Support data submission, archiving
and sharing processes
 Integrate with secure cloud services for
data processing
 Enable sharing of data to third parties
who have the appropriate access
permissions
Creating such data platforms is a collaborative effort between (at least) the
research community, IT infrastructure providers and data collecting
organizations

11. EGA and LOCAL EGA
• European Genome-Phenome Archive (EGA) is a European secure
data archive for human data
– Hosted by EMBL-EBI in Hinxton, UK (original location), and CGR in
Barcelona
– Collects associated metadata with search functionality
– Data Access Committee (DAC) workflow for requesting access to data.
– REMS software originating from ELIXIR Finland / CSC planned to provide
digital process for managing entitlements
• Local EGA is an effort to build distributed Nodes of EGA in Europe
– Work task in ELIXIR EXCELERATE project
– Nordics support this with resources and coordination from Tryggve
– Submission and distribution of data via the node (Local EGA)
– Metadata search and permissions at central EGA

12. https://www.ebi.ac.uk/ega

13. LOCAL EGA PLAN IN THE ELIXIR EXCELERATE
PROJECT
• Target is to provide software infrastructure (Local EGA) that
allows Elixir Nodes, biobanks and institutions to:
– host controlled-access human data in a similar way to how the EGA is
currently doing
– share the publicly visible metadata with EGA in order to facilitate
discovery and findability
• It is assumed that there are restrictions on moving genomic raw
data or other sensitive data across borders/limits established by
national laws or institutions.
• The ELIXIR nodes hosting Local EGAs are planned to take care of
hardware, communications, and other infrastructure, also for
the management of such "facility”

14. PLANNED USE CASE: DATA ARCHIVE FOR
BIOBANKING
• Setting up a databank solution for Danish National Biobank to
facilitate submission, archival and access to digital data
• What Tryggve2 can do
– Support from the Nordic expertise by the local node (DTU /
Computerome)
– Dedicated person to support the case
– Joint development work on common components, especially Local EGA
– Influence overall development of Nordic secure e-infrastructure
• Additional components for wider adoption ?
– REMS provides complete process for managing entitlements
– CPRAS for data pseudonymization and anonymization

15. AUTHORIZATION MANAGEMENT WITH REMS
• REMS provides complete process for managing entitlements
• Demo available at https://remsdemo.csc.fi/
Principal
investigator
Applicant
Research group
Members of the
application
Metadata on
dataset 1&2
Dataset 1
Dataset 2
DAC 1
Approver
DAC 2
Approver
REMS
Workflow
Reports
Entitlements
IdP
IdP
IdP
SP
1. Apply
for access
4. Approve
5. Access
3. Circulate
to approver
2. Commit to
licence terms

16. SUMMARY
TRYGGVE PROVIDES SECURE SERVICES ACROSS BORDERS
A Secure private cloud is an
infrastructure operated solely to provide an
on demand specific use case service
transparent to the end user
 Nordic ELIXIR Nodes collaborate to
create a region where all the secure
services are accessible to users
regardless of their location
 Pragmatic: mobility of data, mobility of
users, mobility of pipelines
 Based on secure data and computing
environments in each participating
country
 Cross-border use cases are in
operation

17. CONTACT INFO
17
Project Manager:
Antti Pursula
antti.pursula@csc.fi
Website:https://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