Biobanks & Registers Strategic Initiative

Summary

Biobanks and health data registers can give unparalleled insights, paving the way for new treatments and medical products. Biobanks and registers are goldmines, but access can be perceived complicated for industry and startups. Moreover, the biobanks and health data register ecosystem is highly fragmented since there is not consensus on management of data and sample within Europe and even within the same region or country.

Through the strategic initiative “Biobanks and Registers in Transition” strategic initiative, EIT Health aims to accelerate the use of biobanks and health data registries including simplifying access, in order to gain improvements for R&D and to implement new innovations faster into the market.

Part of this will be information packages providing detailed overview over resources and access rules of different countries in Europe and a yearly matchmaking conference in the Fall that will support partners in their application. 

Registries and Biobanks in Transition

This strategic EIT Health initiative works to accelerate the use of big data, biobanks and quality registries in development of new healthcare solutions. The initiative is especially focused on helping to get access to biobanks and registries in Europe, which are goldmines of data but can be perceived as difficult to access.

Team

The initiative’s steering group consists of:

• Per Matsson (Chairman), ThermoFisher Scientific
• Jan-Olov Höög, Karolinska Institutet
• Eva Tiensuu Jansson, Uppsala University
• Kristian Krag, Region Hovedstaden
• Lukasz Kozera, BBMRI-ERIC
• Jeroen Kemperman, Achmea / Zilveren Kruis
• Roel van der Heijden, UMCG School of Public Health
• Anders Gustafsson, Karolinska Institutet
• Henning Langberg, Copenhagen Healthtech Cluster
• Gawyn Edmunds, Region Skåne
• Lili Milani, University of Tartu

The partners

• EIT Health Belgium – The Nerdelands – Luxemburg – Israel
• BBMRI-ERIC

The initiative

The strategic initiative RABBIT seeks to address several issues, with the overall goal of simplifying access to biobanks and quality registries in order to gain improvements for R&D and to implement new innovations faster into the market.

The initiative is an outcome of discussions in the 2018 EIT Health ThinkTank Round Table, in particular one held 13 August 2018 in Stockholm, during which it was noted that there are different rules in different countries impacting how biobanks and registries act today. Based on this discussion EIT Health chose to address the situation of access to registries and biobanks, starting with a focus on the situation in Sweden, Estonia and Denmark initially. In 2020, this initiative has already expanded to other European regions that will continue scaling-up the project in the coming years.

The initiative focuses on industry needs, setting up dialogues with industry representatives, mapping their needs, and establishing ways of providing information, encouraging use of biobanks, and strengthening collaboration between industry and biobanks/registries. We foresee that the strategic activity will support the EIT Health Partners by saving time and simplifying access to biobanks and quality registries.

Impact

For EIT Health Partners and other healthcare innovators:

• Fragmented information from biobanks and registries made easy to find on one site.
• Increased quality of innovations using big data.

For Biobanks:

• Increased exposure.
• Knowledge of industry needs.
• Bringing industry closer to biobanks.

External Partners:

• Estonian National Biobank, University of Tartu
• The Danish Biobank
• Biobank Sweden
• Danish national portal for health registries
• Swedish registries
• Estonian national portal for Registries(Health registries are managed by Estonian Health Insurance Fund and Ministry of Social Affairs).
• BBMRI-ERIC