BBMRI-NL is building and implementing the Dutch National Biobank Infrastructure, i.e. collecting, managing and making accessible data, samples and images for personalized medicine & health research. BBMRI-NL enables the (re)-use of human samples, data and images, to advance biomedical research with compliance with ethical, legal and privacy demands and active participation of donors.
A strong feature of BBMRI.nl is the contribution of population imaging. Linked to “traditional” biobank measurements like life style, clinical characteristics, biomarkers, omics the addition of image analysis broadens the scientific value of biobank/cohort studies. Within BBMRI-NL both large scale image acquisition procedures as well as images processing pipelines have been developed.
BBMRI-NL coordinates the national support for ELSI aspects of biobank research. This includes National policy and legislation, often linked to European developments like the GDPR. In collaboration with other research organizations, information meetings and support sessions are organized. The data and IT aspects of biobank research are well organized within BBMRI-NL, closely linked to the BBMRI-ERIC IT common service. There is a national catalogue of all biobank studies in the Netherlands, as well as sample catalogue of the larger studies. This includes the national pathology archive, which includes the pathology samples of all Dutch hospitals.
BBMRI-NL, EATRIS-NL, and DTL/ELIXIR-NL have developed a common vision and roadmap on how The Netherlands can set course for a collective Personalized Medicine & 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 sharing of data, images and biomaterials among researchers, medical practitioners, and 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 goal of improving prevention, diagnosis and prognosis of diseases. Moreover, it will bring innovations to patients faster. 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 provides an important step in this direction. For BBMR-NL 2.0 the Health-RI initiative is an important spot on the horizon driving the integration of complementary efforts dealing with data, tissue, samples, population imaging and IT to create the complete solution for translational research.