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
-
Press release - Collaborating on Big Data to unravel disease processes
Patients with the same illness often receive the same treatment, even if the cause of the illness is different for each person. Six Dutch universities are combining forces to chart the different disease processes for a range of common conditions. This represents a new step towards ultimately being able to offer every patient more personalized treatment. The results of this study have been published in two articles in the authoritative scientific journal Nature Genetics.
The research has been made possible thanks to the cooperation within the BBMRI biobank consortium (Biobanking and BioMolecular resources Research Infrastructure) of six long-running Dutch population studies carried out by the university medical centres in Groningen (LifeLines), Leiden (Leiden Longevity Study), Maastricht (CODAM Study), Rotterdam (Rotterdam Study), Utrecht (Netherlands Prospective ALS Study) and by the VU Amsterdam (Netherlands Twin Register) plus the national centralized computational facility of SURFsara and the ErasmusMC Human Genomics Facility HuGE-F. The study links in with the Personalized Medicine route of the Dutch National Research Agenda.
-
Press Release: Dutch Research Infrastructure to enable Personalized Medicine and Health research
The first Health-RI Conference in Amersfoort, the Netherlands, on 1 December 2016 highlights the developments regarding Health-RI, the nationwide research infrastructure for personalized medicine and health research. This platform was developed by a cooperation of Dutch organizations, to bundle strengths and combine research data. The organizations involved in this platform are BBMRI-NL, ELIXIR-NL, EATRIS-NL, NFU, DTL, Health~Holland and Lygature.
To enable personalized medicine and health, scientists study large groups of patients and healthy citizens for longer periods of time. With biomaterials and health data they investigate how individual biological differences influence our health. In the Netherlands, these studies are performed at numerous locations, usually independent from each other. This is inefficient, especially because data of many citizens and high-end technology from multiple research disciplines are required to properly map such relationships.
To improve collaboration and data sharing, a new generation research infrastructure is required. Therefore, several Dutch research organisations have jointly developed the Health-RI initiative. Health-RI stands for ‘Health research infrastructure’. It offers a clear vision and roadmap to establish a single interconnected national infrastructure for personalized medicine and health research.
Professor Frank Miedema (UMCU and NFU): “Health-RI is the nationwide infrastructure for personalized medicine & health research and provides a one stop shop for researchers. With Health-RI we can bundle strengths and work efficiently on solutions for various health problems”.
More information
Within Health-RI, research organizations work together with public-private organizations and trade organizations. Health-RI is the umbrella over the Dutch nodes of the European Strategy Forum on Research Infrastructures (ESFRI): BBMRI, EATRIS and ELIXIR. For more information, watch the Health-RI animation or visit www.health-ri.nl.
-
Federa Award to David J. Stewart and Razelle Kurzrock
Federa, Foundation Federation of Dutch Medical Scientific Societies, gives the 2016 Federa Award to David J. Stewart and Razelle Kruzrock.
Professors Stewart (University of Ottawa, Canada) and Kurzrock (UCSD Moores Cancer Center, San Diego, California, USA) proposed a radical change of strategy for anticancer research in 2009.
Clinical trials should aim to find large differences in small groups of patients, and not small differences in large groups. The success of medicines is not measured in statistical significance but in the clinical relevant benefits for the treated patients.