BBMRI-NL is building and implementing the Dutch National Biobank Infrastructure, i.e. collecting, managing and making accessible data, samples and images for personalised medicine and health research. BBMRI-NL enables the (re)-use of human samples, data and images to advance biomedical research in compliance with ethical, legal and privacy demands and the active participation of donors.
A strong feature of BBMRI.nl is the contribution of population imaging. Linked to “traditional” biobank measurements like lifestyle, clinical characteristics, biomarkers and omics, the addition of image analysis broadens the scientific value of the biobank/cohort studies. Within BBMRI-NL, both large-scale image acquisition procedures as well as image-processing pipelines have been developed.
BBMRI-NL coordinates national support for ELSI aspects of biobank research. This includes national policy and legislation, which are often linked to other European developments like the GDPR. In collaboration with other research organisations, informative meetings and support sessions are organised. The data and IT aspects of biobank research are well-organised within BBMRI-NL, closely connected to the BBMRI-ERIC IT common service. A national catalogue of all biobank studies in the Netherlands and a sample catalogue of the larger studies are available. This includes the national pathology archive, which comprises pathology samples from all Dutch hospitals.
BBMRI-NL, EATRIS-NL and DTL/ELIXIR-NL have developed a common vision and roadmap that shows how The Netherlands can set course and begin to create a collective Personalised Medicine and Health Research infrastructure. The goal is to bundle and connect a wide range of resources, including biobanks, IT technologies, facilities and data collections, into one large-scale research infrastructure named Health-RI.
Health-RI will stimulate and facilitate collaboration through the sharing of data, images and biomaterials among researchers, medical practitioners and members of the general population (patients and healthy citizens) at a national level. This will facilitate the development of a continuously growing knowledge base available for research and data mining, with the aim to improve the prevention, diagnosis and prognosis of diseases. Moreover, this knowledge base will enable innovations to reach patients more quickly. A crucial factor to the success of Health-RI is the common commitment to invest in research and sharing resources. In addition, a national (e-)health system needs to be developed. This will give citizens full control over their personal data, while ensuring privacy protection. The Health-RI roadmap takes an important step in this direction. For BBMR-NL 2.0, the Health-RI initiative represent an important goal on the horizon, driving the integration of complementary efforts related to data, tissue, samples, population imaging and IT, to create the complete solution for translational research.