Support for Nordic research projects in managing sensitive

dataThe 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

3

Use cases

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

5

Suitability for Tryggve use case

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

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

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

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

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

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

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/

13

Contact

Project Manager:Antti Pursulaantti.pursula@csc.fi

Website: wiki.neic.no/Tryggve

Local contact points:Denmark: Ali Syed (DTU) alisyed@cbs.dtu.dkFinland: Antti Pursula (CSC) antti.pursula@csc.fiNorway: Francesca Iozzi (UiO) m.f.iozzi@usit.uio.noSweden: Niclas Jareborg (NBIS) niclas.jareborg@bils.se