Overview of Biobanks in The Netherlands
The Dutch biobanking landscape is extensive for such a small country, consisting of 99 biobanks containing more than 250 collections. Similar to Belgium, the landscape is dominated by the eight University Medical Centres (UMCs) and the Netherlands Cancer Institute (NKI). They host the largest portion of Dutch biobanks, generally as an integral part of their own organisation. Most UMCs have some form of centralised biobank infrastructure that manages the individual sample collections and supports researchers with collection, storage, analysis, and/or distribution. In addition, all Dutch UMCs have a central residual tissue/secondary use biobank, based at their pathology department. Such residual use biobanks contain samples (e.g. tumour tissue) extracted during care processes. When patients do not explicitly object, residual material can be used for scientific research.
Biobanking and Biomolecular Research Infrastructure for The Netherlands (www.bbmri.nl), the Dutch node of BBMRI-ERIC, was established in 2009 to create a national biobanking infrastructure,
encourage collaboration between the separate biobanks and promote scientific research. BBMRI.nl aims to make samples, images, and data retrievable, accessible, and exchangeable by enrichment and harmonization of existing Dutch biobanks. BBMRI.nl also takes the lead on the legal, social and ethical issues (ELSI) surrounding biobanking in the Netherlands (for example by developing an ELSI Servicedesk, which is now hosted by Health-RI, see below).
BBMRI.nl hosts the BBMRI.nl Catalogue, a searchable database containing most Dutch biobanks and sample collections. It serves as the source for Dutch biobank collections in the BBMRI-ERIC Biobank Directory. Responsibility for updating the Catalogue lies with the individual biobanks and collections. The BBMRI.nl Catalogue is connected to PODIUM. PODIUM is an online one-stop-shop to request samples, images and data from multiple national health registries, health databases, image archives and biobanks. The number of organisations that use PODIUM as a request service is growing steadily.
BBMRI.nl has also created a combined BBMRI-Omics dataset of 3,500 samples from 29 Dutch biobanks and cohorts with integrative omics-data (genome, epigenome, transcriptome and metabolome) with an extension of the metabolome in 30,000 extra individuals and whole genome sequences of a selective group of 700 individuals. The BBMRI-Omics data set allows the study of relationships between different omics levels and the development of omics signatures of health and disease. The dataset is publicly available and can be queried using the BBMRI-Omics Explorer. The BBMRI Omics data set is the joint collection of the GoNL consortium, BIOS Consortium and the Metabolomics Consortium.
BBMRI.nl is part of Health-RI, a public-private partnership of organizations involved in health research and care. It brings together the efforts of BBMRI-NL, EATRIS-NL (European infrastructure for translational medicine, Dutch node) and ELIXER-NL (European data infrastructure for the life sciences, Dutch node), amongst others. It is Health-RI’s mission to build an integrated health data research infrastructure accessible for researchers, citizens and care providers. Health-RI follows three strategic paths: 1) Collective action: optimizing the conditions for building and maintaining a national health data infrastructure; 2) Building a national health data infrastructure: fostering and facilitating initiatives and collaborations directed at developing health data infrastructure; and 3) Providing mature services: supporting researchers and data managers by making infrastructure services, tools and data easy to locate, access and use.
Nation-wide biobank initiatives
All Dutch pathology laboratories, in UMCs and other Dutch hospitals are connected through the Nationwide Network and Registry of Histo- and Cytopathology in the Netherlands (PALGA). PALGA contains the results of every single pathology test: malignancies, benign disorders, as well as the results of tests in which no abnormalities were found, resulting in a dataset containing extracts of 73 million pathology reports. The data in the central system forms the basis for the national cancer registry. PALGA is indispensable for the evaluation and monitoring of population screening programmes and can be used for the purposes of scientific research.
String of Pearls initiative (Parelsnoer, part of Health-RI)
All eight UMCs collaborate within the String of Pearls initiative (PSI). PSI is a federated clinical biobank containing 18 “Pearls”, with each Pearl representing a specific disease area. For each Pearl, the participating UMCs collect samples and data according to the same procedures. Consequently, the samples and data can be pooled and shared between the UMCs, creating a larger distributed and virtual collection. Since 2020, the String of Pearls initiative has become part of Health-RI.
European Population Imaging Infrastructure in the Netherlands (EPI2).
Actually more a databanking then a biobanking initiative, EPI2 is an infrastructure for large-scale imaging of human population cohorts and a node of EuroBioImaging. As such, EPI2 collaborates closely with BBMRI.nl. EPI2 provides standardized image acquisition protocols, central storage facilities, validated image-analyses pipelines, and biomarker reference databases for population-based and clinical imaging studies. In addition, EPI2 provides access to several image databases and data sets and links to multiple large European cohorts.
Access to biobanks in The Netherlands
The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health