Registries and Biobanks in Transition
This strategic EIT Health project works to accelerate the use of big data, biobanks and quality registries in development of new healthcare solutions. The project is especially focused on helping give EIT Health Partners access to biobanks and registries in Scandinavia and Estonia, which are goldmines of data but can be perceived as difficult to access.
Biobanks and quality registries are valuable tools for product development and validation, molecularly stratified clinical trials, follow-up of current healthcare outcomes, predicting impact of new products and services, 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 working to support its Partners in simplifying access to biobanks and quality registries, and to help them leverage the assets available in Denmark, Estonia and Sweden.
Project Manager: Merike Leego, Innovation Manager, EIT Health Scandinavia previously worked for 15 years in the Estonian national biobank.
The project’s steering group consists of:
- Per Matsson (Chairman), ThermoFisher Scientific
- Eva Tiensuu Jansson, Uppsala University
- Anders Gustafsson, Karolinska Institutet
- Lili Milani, University of Tartu
- Henning Langberg, Copenhagen Healthtech cluster
- Gavyn Edmunds, Region Skåne
The strategic activity 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, in particular by leveraging the Scandinavian and Estonian assets in biobanks and data registries.
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. This project is piloted in Scandinavia, but we expect to expand it all over the Europe.
The project 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.
- Web site acting as a portal to ease access to biobanks and registries.
- Mapping of current projects involving biobanks and registries and ways to improve access.
- Face-to-face meetings with pharma companies.
- Co-development of Digital Sandbox call, with EIT Health Accelerator, for projects to increase use of biobanks/registries.
- EIT Health Matchmaking event in Stockholm, 21 October 2019, with focus on using registries and biobanks.
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 this is 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/CLC 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).