Strategic initiative: Registers and Biobanks in Transition
Accelerating the use of big data for health care
Biobanks and health data registers can give unparalleled insights, and Scandinavian and Estonian biobanks and health data collections are true goldmines. Access to qualitative sample and data collections can be very valuable tools in R&D, paving the way for new medicines, treatments and medical products. Access can, however, be perceived complicated.
Through the “Biobanks and Registers in Transition” strategic initiative, EIT Health Scandinavia aims to accelerate the use of big data, biobanks and health data registries in development of new healthcare solutions, through helping the EIT Health Partners in their R&D ambitions. The initiative seeks to address several issues which hinders the Partners from leveraging the Scandinavian and Estonian assets in biobanks and health data collections, including simplifying access, in order to gain improvements for R&D and to implement new innovations faster into the market.
Biobanks and quality registries are valuable tools for product development and validation, molecularity stratified clinical trials, follow-up of current healthcare outcomes, predicting impact of new products and services, including cost-benefit analysis, and more. Access to qualitative sample and data collections can give unparalleled insights, paving the way for new medicines, treatments and medical products.
EIT Health is supporting its partners in simplifying access to biobanks and quality registries, leveraging the assets available in Denmark, Estonia, Sweden, Belgium, the Netherlands and Luxembourg. Through the project EIT Health aim to facilitate the use of biobanks and health data registries that will will aide the development of new healthcare solutions and accelerate R&D. Through a separate project called Digital Sandbox EIT Health facilitated collaborations with startups and biobanks & health data registries.
Project lead: Monica Centa, Education Lead, from June 2023
The EIT Health project ‘Registries and Biobanks in Transition’ (RABBIT) was initiated by Merike Leego, Innovation Led EIT Health Scandinavia in 2018. During April 2020 – Jan 2021 the project was managed by a full time project manager Ulrika Zagai, who has spent 11 years at Karolinska Institutet coordinating sample and data collections in both case-control studies and big cohort studies. Between January 2021- May 2023 the project was managed by EIT Health Scandinavia’s collaboration lead Zara Pons Vila who has managed to secure additional funding and developed the project further to include a revamp of the site including a new training module to be launched in November 2023.
EIT Health’s objective is to accelerate the use of biobanks and health data registries by developing new healthcare solutions and in this way help industry accelerating their R&D.
The initiative’s steering group consisted of:
• Per Matsson, previously 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 strategic initiative Registers and Biobanks in Transition was seeking 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, in particular by leveraging the Scandinavian and Estonian assets in biobanks and data registers.
The initiative is an outcome from discussions taking place in the 2018 EIT Health ThinkTank Round Table, in particular the one held on 13 August 2018 in Stockholm, during which it was noted that there are different rules in different countries impacting how biobanks and registers act today. Based on these discussions EIT Health chose to address the situation of access to registers and biobanks, starting with a focus on the situation in Sweden, Estonia and Denmark. This initiative is piloted in Scandinavia, but we expect to expand it all over Europe.
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/register. We foresee that the strategic activity will support the EIT Health Partners by saving time and simplifying access to biobanks and quality register.
- A portal to ease access to biobanks and register. The Biobanks & Health Data Information Hub.
- Mapping of current projects involving biobanks and registries and ways to improve access.
- Face-to-face meetings with pharma companies.
- Co-development with the EIT Health Accelerator Team on a Digital Sandbox call to increase and facilitate the use of biobanks/registers for start-ups.
- A matchmaking event Biobanks and Registers – your springboard to innovation – was held in Stockholm in 2019 and a follow-up matchmaking event Biobanks and Health Data Registers Matchmaking event was held on 23 November 2020.
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.
- Easy validation of developed products and disease prediction algorithms, or stratification of target group of clinical trials.
- Identifying challenges and needs.
- Increased exposure.
- Knowledge of industry needs.
- Bringing industry closer to biobanks.
For patients and the healthcare system:
- Biobanks and registries offer a wealth of possibilities to advance healthcare through evidence-based approaches.
Why is this an EIT Health project
We aim to create soft infrastructure to facilitate use of big data, health registries and biobanks primarily among EIT Health Partners. Value for EIT Health:
- A showcase of how to support usage of biobanks and registries in developing healthcare solutions.
- Testing the working model in one region/HUB and multiplying all over the Europe.
- Increased quality of EIT Health project proposals by using big data.
- Better quality of projects, improved chances that the project outcomes will be adopted by the market.
- Increased awareness and use of biobank assets among EIT Health 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).
Biobanks & Health Data Information Hub
Access biobanks and health data registers. We make it easier to establish productive collaborations that will help shape the future of healthcare and translational medicine.