Biobanks & Registers Strategic Initiative

Accelerating the use of big data for healthcare

Summary

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. Biobanks and health data registers are also very valuable for product development and validation, molecularly stratified clinical trials, and valuable sources for follow-up of current healthcare outcomes, for predicting impact of new products and services, including cost-benefit analysis. Access can, however, be perceived complicated.

Through the strategic initiative “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. Part of this will be information packages providing detailed overview over resources and access rules, and the matchmaking conference on 21 October, aiming for supporting Partners in developing proposals for the EIT Health Business Plan 2021.

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 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.

Origins

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.

Team

Project Manager: Merike Leego, Innovation Manager, EIT Health Scandinavia previously worked for 15 years in the Estonian national biobank.

The initiative’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 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, 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 initiative is piloted in Scandinavia, but we expect to expand it all over the 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/registries. We foresee that the strategic activity will support the EIT Health Partners by saving time and simplifying access to biobanks and quality registries.

Planned outcomes:

  • 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.

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.
  • Easy validation of developed products and disease prediction algorithms, or stratification of target group of clinical trials.
  • Identifying challenges and needs.

For Biobanks:

  • 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.

External Partners:

Find out more about the Biobanks & Registers initiative:

Why participate in the Biobanks initiative?

EIT Health Scandinavia`s biobanks and registers in transition (RABBIT) strategic initiative supports its Partners to discover those Partner-owned biobanks and registers that best match their needs, develop effective project proposals, and matchmake with potential new collaborators. Through this initiative you will benefit from:

  • The Biobanks & Registers Information Hub. A one-stop portal which saves your time by having all the needed information in one place.
  • Key facts about theavailable collections and their contents. Increasing the quality of your project proposals.
  • Funding opportunities. To support you develop your proposals and bring them to the market.
  • Access guides to biobanks and registers. Facilitating you navigate the various legislations and reqirements to obtain samples and data.
  • Essential facts on legal, regulatory & quality requirements. Helping you when developing collaborations and proposals
  • Lists of challenges and identified needs in the field. Providing inspiration for new proposals.
  • Inspiring real user cases. Creating awareness of the value of biobanks and registers and how you can benefit from these.

Want to know more? Welcome to contact us!

Merike Leego, MSc
Innovation Manager, Coordinator for the Biobanks & Registers Strategic Initiative
+372 528 1488 (Estonia)
+46 (0)73 155 30 23 (Sweden)
merike.leego@eithealth.eu

The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health