Projects
BBMRI.nl
Making biosamples, images and data findable, accessible and usable for health research.
As part of the BBMRI-ERIC® consortium, BBMRI.nl is building and implementing the Dutch National Biobank Infrastructure. It collects, manages and makes accessible both the samples and the data and images needed for personalized medicine & health research. BBMRI.nl enables global (re)-use of resources.
20
partners from the Netherlands
€ 12.5 M
funding from NWO
About BBMRI.nl
BBMRI.nl aims to maximize the use of biosamples, images and data for health research on the prevention, diagnosis and treatment of disease in The Netherlands. In order to do so, BBMRI.nl provides: 1) access to biosamples, images and data, 2) tools to capture, integrate and analyse data, and 3) support on ethical, legal and societal implications. This is done with active participation of donors, citizens and patientsBBMRI.nl ensures that all developed resources are available in a Findable, Accessible, Interoperable and Reusable (FAIR) way.
BBMRI.nl is the Dutch National Node of BBMRI-ERIC: a European research infrastructure for biobanking that brings together the main players of the biobanking field - researchers, biobankers, industry, and patients - to boost biomedical research.
Visit the BBMRI.nl website for more information.
Ensuring operational excellence and providing data expertise
Six integrative Work Packages within BBMRI.nl each serve one or more parts of the strategy. Lygature was appointed to lead WP1 and to contribute to three, namely WP4, WP5 and WP6.
On behalf of Lygature, Tieneke Schaaij-Visser represents one of the WP-leaders managing the organisation, finances, communication, and collaborative activities within WP1 for BBMRI.nl. Lygature was granted this responsibility because of its experience with complex projects and its proven ability to manage the broader requirements of research, ranging from communications to legal issues. Lygature takes action in the following areas within BBMRI.nl:
- Program management. Lygature handles day-to-day operations including administrative and financial roles. It is responsible for all communications, and assists the SEC in coordinating, managing and monitoring the program on a day-to-day basis.
- Enabler of the biobank infrastructure. Lygature brings together the experts who build and implement the Dutch National Biobank Infrastructure. Aligning these processes allows for linkage of biobanks and clinical registries with the aim to promote secondary use of available samples and data for scientific research. Optimized tools are the request portal Podium and the Catalogue for sample and data collections.
- IT Infrastructure, support and access. Expertise acquired during the TraIT project has been pivotal in addressing data management, using proven solutions for multi-site data sharing and analysis.
- Facilitation of the Patient and Public Advisory Council (PPAC; Maatschappelijke Adviesraad Biobankonderzoek). The PPAC ensures the roles, interests, concerns and needs of patients and the pubic in biobank research and advices regarding its ethical and public aspects. Lygature actively enables the work of the PPAC by organizing its meetings, providing secretarial services, and promoting its work.
- Communications. Lygature disseminates information to internal project partners and externally - to the wider research community and general public. This includes maintenance of and posting on the project website, creating and mailing of newsletters and overall PR. Regular meetings with all WP leaders help to ensure the proper coordination of the project and that Lygature communicates efficiently in order to address emerging issues.
- Health-RI. Health-RI is the Dutch national initiative aiming to facilitate and stimulate an integrated health data infrastructure accessible for researchers, citizens and care providers. BBMRI.nl is one of its initiators, and Lygature is participating in its development.
Lygature’s role within BBMRI.nl demonstrates the wide range of different skills on offer to academics and commercial organizations. The project demands expertise in operational management, data management, regulatory issues, societal engagement, finance, and science. Importantly, Lygature is also playing an active ongoing role in promoting further improvements of research infrastructure.
Lygature together with
Amsterdam UMC, Erasmus Medical Center, Leiden University Medical Center, Maastricht University Medical Center+, Radboud University Medical Center, University Medical Center Utrecht, University Medical Center Groningen , Netherlands Cancer Institute, VU University Amsterdam, Parelsnoer, PALGA, Netherlands Heart Institute, SURFsara, Dutch Techcentre for Life Sciences, Legal Pathways, The Hyve, University of Groningen, Molgenis
Project updates
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BBMRI-NL workshop report: Sustainable infrastructure for sample/data collections
Sample and data infrastructures in the medical sciences, such as biobanks and medical registries, need to run over prolonged periods of time in order to gather data and deliver research results. Only then can they hope to deliver on their promise of personalized medicine. However, it is precisely this sustainable existence that is a constant challenge. And as such, sustainability is a pressing issue for individual infrastructures and for national and international policymakers and funders. To support the Dutch sample/data infrastructure field in their sustainability challenge BBMRI-NL organised a meeting consisting of three workshops. The results of these three workshops are presented in a report. Read more
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White paper on self-measured data
Recently, BBMRI-NL researchers published a White Paper on self-measured data and how researchers can ensure that self-measured data is usable. Private individuals are collecting more and more data about their lifestyle and health using sensors, apps and other measuring devices: from blood sugar monitoring in diabetes to step counting. Medical and scientific researchers make use of self-measured data, which is collected at the research site or in the normal healthcare setting. Now that it is getting easier to collect and process data digitally, it is worthwhile to investigate the extent to which the collection of research data can be assigned to the participants themselves and how efficient and cost-effective that is. Read more
Download White Paper ‘Private individuals as collectors of their own data for biobank research’
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BBMRI-NL voucher results in practical research tool for high school students & teachers
Now online, the newly developed program ‘Smart steps in your Own Research’. It helps high school seniors to be better prepared for their profile assignments (‘profielwerkstuk’) and final exams. Writing a good research question is quite a challenge for high school students. They are mostly not yet acquainted with Excel, nor do they know how to collect data and show results nicely. The new program assists teachers with a clear manual and accompanying instruction films. For students who are interested in ‘Big data’, several BBMRI-NL research groups have made anonymous files available with which students can practice.
Eline Slagboom and Joyce Vriezen (both LUMC) and Gonneke Willemsen (VU) developed the tool with financial support from the 2016 BBMRI-NL voucher project. The entire interactive program is already online. Teachers can immediately start working on it. Read more