Biobank Norway 4 - a national biobank research infrastructure

As a national research infrastructure, Biobank Norway (BN1 2011-15, BN2 2016-20, BN3 2020-24) has been instrumental in the establishment of a modern, advanced and comprehensive nationwide biobank network at all partner institutions and has fulfilled a primary objective of promoting outstanding research. Biobank Norge 4 will is gradually moving towards the following aims: i) to meet new and urgent needs related to a new national data landscape, previously led by the Directorate for e-Health (NDE), now FHI and the Directorate of Health, ii) to lay the foundation for promoting personalized medicine, and iii) to develop the biobank network to meet data dependent, analytical challenges that arose during the COVID-19 pandemic with clear relevance to national preparedness in general. Due to legal challenges with data sharing in a cloud solution, the establishment of HAP (Health Analysis Platform) has been stopped, but BN is heavily involved in an alternative solution developed by the university sector based on TSD (UiO), HUNT Cloud (NTNU) and SAFE (UiB). BN is working towards on portal for for access to all biobanks, a solution that will be integrated with Helsedataservice and their researcher portal for access to register data. To achieve our goals, BN4 also collaborates with national and European "sister infrastructures", including other Research Council-funded infrastructures such as ELIXIR, NorCRIN, NSC (Norwegian Sequencing Center) and BioMedData. BN4 will support the ongoing work at helsenorge.no to facilitate a digital dialogue with research participants and biobank donors. This synergy will optimize the use of the significant infrastructure investments that have already been made by utilizing the expertise and knowledge of partner infrastructures. BN4 also involves a merger with MoBa's infrastructure application (iMoBa). This joint initiative significantly strengthens BN4 in several areas, i.a. through a uniform and strategically coherent plan for the development of good digital administrative solutions, including data banks for returning analysis results which can in turn be used by all researchers upon application. We contribute to the further development of metadata and visualization tools for large genetic databases, and the compilation of a FAIR-compatible, harmonized genotype data set across cohorts, an important contribution in the field of personalized medicine. BN has also started a structured research collaboration with industrial players, i.e. with a start-up company partly supported by the Research Council. BN is strongly involved in the European research infrastructure for biobanks, BBMRI-ERIC, and leads through NTNU, in collaboration with BBMRI-ERIC, a recently started (01.01.2024) EU project to develop a new concept for a European research infrastructure for large medical cohorts (INTEGRATE LMedC).

Going forward, BN4 will transition nto an exciting next phase of infrastructural development, targeted at: 1) new and urgent needs related to the rapidly evolving national data landscape under NDE, 2) laying foundations to advance precision medicine, and 3) tooling our network to respond to data-critical challenges that have emerged under the COVID-19 pandemic and have a clear relevance for national preparedness in general. In this work, BN4 dovetails closely with Directorate of e-Health to facilitate seamless integration of BN-related data on to a future centralized solution HAP. This includes piloting procedures for the first time with population-based data, which will lay the groundwork for future roll-out of other cohort studies and other types of biodata. In addition, the BN Dir for e-health interface will be instrumental in developing protocols to handle genetic data and will also play a vital role in other essential activities as reflected throughout this application. To achieve our goals BN4 collaborates closely with sister infrastructures such as ELIXIR, the NSC (Norwegian Sequencing Center), and BioMedData to achieve FAIRness with the genetic data. BN4 will also join ongoing work in helsenorge.no building tools that facilitate the dialogue with research participants and biobank donors. This synergy of efforts will greatly enable BN4 to leverage significant infrastructure investments that have already been made, avoiding duplicative efforts and exploiting expertise and know-how at our partner infrastructures. A novel feature of BN4 is our merger with the infrastructure proposal for MoBa (iMoBa). This joint initiative greatly strengthens BN4 on several arenas, including the development and implementation of a unified and strategically coherent plan for solutions within the Health Data Program, extending metadata and visualization tools to cover large genetic databases, and the assembly of a FAIR-compliant, harmonized dataset for research towards precision medicine.