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BBMRI.nl knowledge base
BBMRI-ERIC is a European research infrastructure for biobanking. In 25 states, it brings together researchers, biobankers, industry, and patients to boost biomedical research. BBMRI-ERIC offers quality management services, support with ethical, legal and societal issues, and a number of online tools and software solutions with the ultimately goal to make new treatments possible.
The Dutch node of BBMRI has been established through subsequent programs sponsored by the Netherlands Organization for Scientific Research (NWO). Between 2008-2014, BBMRI.nl set up a collaboration between existing clinical and population biobanks in the Netherlands and formed the link to BBMRI-ERIC. BBMRI.nl aimed at enrichment and harmonization of Dutch biobanks including data management and analysis, laying legal, social, and ethical foundations and to improve access to and interoperability between biobanks.
Between 2015-2019, the focus moved towards making the infrastructure for joint biobank activities in the Netherlands future-proof. After a bridging period, parts of the BBMRI.nl portfolio have been integrated, together with the Parelsnoer initiative for clinical biobanks, into the national health & life sciences data infrastructure Health-RI, which receives funding for the years 2023-2029 from a National Growth Funds of the Dutch government. BBMRI.nl operates mainly within the Health-RI pillar Biobank & Collections and applies the organizational structure of Health-RI with a national hub and regional nodes centered at the Dutch academic hospitals. BBMRI.nl defines itself as community that brings stakeholders and partners in the biobank research field.
The goals of BBMRI.nl are realized in close collaboration with other ESFRIs, including ELIXIR, EATRIS, and EuroBioImaging. Health-RI envisions to establish and manage an ESFRI-overarching service portfolio (a so-called “House of Services”) to support health & life sciences researchers in the Netherlands.
In 2024, BBMRI-ERIC celebrated its 10th anniversary and launched a new 10-Year Roadmap 2025-2035. The co-creation of the Roadmap has been achieved with unparalleled community and stakeholder engagement, also including and inspiring the biobank network in the Netherlands. In a world that is facing continuous and persistent challenges, such as the war against Ukraine and in the Middle East, climate crisis, loss of biodiversity, and environmental degradation, adoption of the One Health paradigm structures our endeavours and enables us to better tackle the complex, interconnected, challenges affecting human, animal, and environmental health. Our response includes developing and implementing climate-friendly operations, alongside advancing global perspectives. Both have become overarching themes within our 10-Year Roadmap.
Further information on BBMRI.NL activities can be found here.
Knowledge base
In this section, you can find the knowledge base of BBMRI.NL.
White papers
The public outreach manual for biobanks provides the strategy and tools to deliver an interactive public outreach day aimed at promoting public engagement and participation in Netherlands biobanks. Its findings and recommendations are based on interviews with biobank representatives to discover practical approaches, tools and communications materials.
Appendix Public Outreach Biobank manual
- Biobanken quiz for kids (ppt)
- Biobanken quiz for kids (pdf)
- Coloring picture for kids
- Example YOU krant 8-14 jaar
- Example YOUth quiz
- Example YOUth flyer photostory
How can we ensure that self-measure data is usable
Self-measurement empowers individuals to take control of their health while maintaining their engagement in research. Effective collaboration between participants, research organizations, and government authorities is essential. Rather than reducing the role of biobanks and research institutions, self-measurement transforms their function, as highlighted in the Whitepaper Self Measurements.
The Donor as Partner (2014) outlines methods and levels of patient participation in biobank governance, serving as a guide for biobanks and participants to find the best participation model. The book is available in English and Dutch
Guides
Guide to the detection, management and communication of incidental findings for biobanks in BBMRI-NL
BBMRI developed a guide outlining practical and ethical approaches to incidental findings in biobank research. It explores options and best practices rather than providing definitive answers. Funded by a BBMRI-Voucher project and created with BBMRI-WP6.
HANDS (Handbook for Adequate Natural Data Stewardship)
The Handbook for Adequate Natural Data Stewardship (HANDS) offers guidelines and practical tools for data stewardship at the eight Dutch UMCs. It supports researchers in creating data management plans and is continuously updated for improvement.
Sustainable biobanking
Biobanks are essential for translational research but often face sustainability challenges. BBMRI.nl supports biobanks with recommendations and knowledge while collaborating with stakeholders to foster sustainable biobanking in the Netherlands.
An interactive infographic providing a quick overview of what you can do to make your biobank more sustainable
A literature review on the financial side of sustainable biobanking, providing background information on topics such as costs, funding, biobank business models, stakeholders, public-private partnerships, and biobank value.
An analysis of 22 biobank case studies published between 2014 and 2018, identifying good practices for sustainability.
An overview of useful business tools you can directly apply to make your biobank more sustainable
Together with Dutch biobanks and biobank users from academia and industry, BBMRI.nl has drafted recommendations toward creating the right conditions for sustainable biobanking.
For each recommendation the authors have made a suggestion for which stakeholders should be involved.
Summary lists priorities for the recommendations.
Three workshops on biobank value; individual challenges and best practices; and underlying causes for a lack of sustainability. Used as input for the recommendations..
The results of four focus groups with Dutch biobank users from academia and industry, providing insight in their experiences, challenges, and expectations. Used as input for the recommendations.
Webinars
Making health data available for research. The next step. Expert meeting #1 2021
On September 9, 2021, Health-RI and BBMRI.nl hosted the first of three expert meetings on advancing health data availability for research, with a focus on collecting FAIR data. Participants from diverse backgrounds discussed the value of FAIR principles and explored tools and standards to FAIRify data at the source. You can find the report here.
Making health data available for research. The next step. Expert Meeting #2 2021
On September 23, 2021, the second expert session focused on strategies for making health data findable and linkable. With 57 participants from various sectors, discussions covered best practices and challenges, particularly GDPR compliance and the differing organization of data sources. You can find the report here.
Making health data available for research. The next step. Expert meeting #3 2021
On October 7, 2021, Health-RI hosted the final expert session on advancing health data availability for research. Discussions with 57 experts focused on procedures and tools for data findability and accessibility. Prof. Dr. Folkert van Kemenade (ErasmusMC) presented BBMRI.nl’s journey in developing the BBMRI Catalogue and BBMRI Podium portals to support these efforts. You can find the report here
How to make health data available for research? Expert Meeting #1
In 2020 Health-RI hosted three virtual expert meetings to explore practical approaches for making health data available for scientific use, highlighting various strategies with distinct strengths and challenges. A robust health research infrastructure is essential for optimal access to knowledge, tools, facilities, data, and samples, enabling sustainable, personalized healthcare. The first expert meeting on October 29, 2020, featured presentations by Fatima El Messlaki (CBS) and Saskia Houterman (NHR), who discussed how their organizations find, access, request, share, and link data.
You can find the report and slides separately.
How to make health data available for research? Expert Meeting #2
On November 12, 2020, the second expert meeting focused on processes for finding, accessing, requesting, sharing, and linking data. Wanda Hermans-Van Ast and Erik van Iperen presented the data management practices within the CAPACITY study at the Durrer Center, while Vincent Ho and Peter Prinsen shared the data procedures at the Netherlands Comprehensive Cancer Organization (IKNL).
You can find the report and slides separately.
How to make health data available for research? Expert Meeting #3
During the third expert meeting held on the 26th of November, Trynke de Jong presented the processes to find, access, request, share and link data within Lifelines. Pascal Suppers highlighted the experiences of DataHub.
You can find the report and slides separately.
Education
Slimme Stappen in eigen Onderzoek is an educational program that encourages scientific thinking in high school students (vwo). It provides a roadmap to guide them through the start, design, and execution of their mandatory research projects. This service was funded as a BBMRI-Voucher project and developed in collaboration with BBMRI-WP2.