Healthcare increasingly moves towards tailored treatments: personalised medicine. Personalised medicine and health research requires large groups of patients and healthy persons, that can only be collected if researchers collaborate. Modern technologies offer biomedical researchers unprecedented opportunities and challenges with regard to the large amounts of complex research data they produce. A sound infrastructure is the foundation to meet the high demands for privacy, quality, management and sharing this research data.
A good, supporting research infrastructure invites researchers to collect, analyse and share data, images, and biomaterials in a structured and standardised way. United in the NFU, the eight UMCs are jointly developing such a research infrastructure, providing significant benefits of scale. For instance, the UMCs are the founders of the Parelsnoer Institute, active participants of BBMRI-NL2.0, the initiators of Data4lifesciences, and participants of Health-RI.
Parelsnoer Institute and BBMRI
The Parelsnoer Institute (PSI) is a collaboration of the eight UMCs in which clinical data, biomaterials, and medical images are collected in a structured and standardised way for research on specific diseases. By jointly collecting data and materials, researchers can examine larger groups of patients, with the purpose of obtaining scientific knowledge and improving patient care. All UMCs are also a partner in BBMRI-NL2.0, the Dutch arm of the European biobank collaboration Biobanking and Biomolecular Resources Research Infrastructure. BBMRI-NL2.0 actively promotes the collaboration and standardisation of biobanks in the Netherlands. An important goal is to unite all relevant biomedical research infrastructures in one national research infrastructure.
In the Data4lifesciences programme (D4LS), the eight UMCs are developing a national infrastructure for life sciences data, in collaboration with national initiatives such as BBMRI-NL2.0, DTL, TraIT, PSI, and SURF. Data4lifesciences aims for an infrastructure to capture, process, analyse, archive and share research data, including an extensive data expertise network. Data4lifesciences is also an important contribution of the Dutch UMCs in the overarching research infrastructure initiative Health-RI.
The larger strategic initiative 'Health Research Infrastructure’ (Health-RI) aims for one comprehensive infrastructure for personalised medicine & health research. The infrastructure will interconnect Dutch biobanks, population cohorts, data collections, medical image collections, and experimental facilities and it closely follows the development of the European Open Science Cloud. Health-RI is an initiative of BBMRI-NL2.0, EATRIS-NL, and ELIXIR-NL, which are all strongly rooted in pan-European research infrastructures (ESFRIs). It will be further developed in collaboration with inter alia the NFU (Data4lifescienes), top sector LSH (Health~Holland), DTL, ZonMw, ministries, universities, health funds, and the private sector.
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