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Legal Pathways BV

Legal Pathways BV

2 Projects, page 1 of 1
  • Funder: Netherlands Organisation for Scientific Research (NWO) Project Code: 184.032.309

    BBMRI-NL (Biobanking and Biomolecular Research Infrastructure-NL) received the highest level (A) status within the domain of Life and Medical Sciences in the 2008 Dutch Roadmap for Large-Scale Research Infrastructures. It is the Dutch Hub of the European Research Infrastructure BBMRI, which after a successful preparatory phase is currently preparing for the legal ERIC-status, supported by the Dutch government. For the past years, several initiatives have been gaining momentum towards improving and expanding the Dutch biobanks, thus building the infrastructure necessary for research into the causes and development of complex diseases. Three of these initiatives, BBMRI-NL, LifeLines and the String of Pearls Initiative (PSI) closely collaborate, as they have complementary aims. This application is therefore submitted on behalf of all three initiatives. The applicants believe that the basis for better, personalized health care lies in collecting large numbers of data and samples of different types (DNA, plasma, serum, urine, etc.) in both clinical and population biobanks, and careful analysis on many levels of the available material in a structured and unified way. This calls for unification of methods, harmonization, enrichment of existing biobanks and the development of powerful data analysis tools, plus the expansion of data and tissue collection in new areas. The basis for all this has been laid in the past years: PSI has set up a collaboration network between the eight Dutch UMC?s and protocols for all biobanking procedures, f.i. collecting and storing; and LifeLines has collected population samples and data from the general population in the Northern part of the Netherlands, building a vast reference repository. Through a swift project-based approach BBMRI-NL has started to harmonize and enrich the existing Dutch biobanks, which together contain an enormous quantity of high quality samples and data. Combined with the level of organization and willingness to cooperate in the Dutch biobanking community these have brought the Netherlands in a position to create real momentum at an international level in this field. Genome of the Netherlands (GoNL) is a flagship project of BBMRI-NL. Involving four major population biobanks, it aims to establish a map of Dutch genetic variation by whole genome-sequencing of 250 trio families of unselected individuals of Caucasian origin, equally distributed across the 11 provinces of the Netherlands. This project is expected to reveal a large portion of the intrinsic genetic variation within the Dutch population. Other projects are aimed at metabolomics, functional and epigenomics and at linking biobanks to medical and socioeconomic registries. Specific attention is being paid to the infrastructure for datamanagement and analysis as well as the necessary legal, social and ethical aspects of biobanking on a Dutch and European level. Now, the time has come for further integration, which can be achieved by a joint positioning of BBMRI-NL, String of Pearls Initiative and LifeLines on the Netherlands Roadmap as a tripartite large-scale biobanking infrastructure, in its process of gradual consolidation into a Dutch Biobanking Hub, closely integrated in the BBMRI Biobanking infrastructure on the European ESFRI.

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  • Funder: Netherlands Organisation for Scientific Research (NWO) Project Code: 184.033.111

    Biobanks are collections of samples, data and images of individuals taken at different stages of their lives, either when they are ill or when they are healthy. They have agreed to take part in health-checks or population health studies. Biobanks are a vital source of information for fundamental and translational biomedical research aimed at the development of better predictive, preventive, personalized and participatory (‘4P’) health care. Historically, Dutch biobanks were developed independently, based on, for example, research interest, local or regional activities, or clinical discipline. Today, in the era of genomics and modern imaging, there is an urgent need to connect the extremely valuable information held in biobanks through a large-scale, standardized biobank infrastructure to avoid redundancy, create efficient research workflows, streamline and facilitate data access, and optimally link various sorts of data. Such a national biobank infrastructure will enable efficient health monitoring, validation of life style interventions and other ways to prevent disease, deliver better diagnostics and therapeutics, and expand the leading position of the Netherlands in international biomedical research. A large-scale biobank infrastructure is also essential to help generate the ‘evidence base’ required by registration and reimbursement authorities to assess the impact/quality/cost-benefit ratio of screening programmes, medications and treatments. The Netherlands is currently one of the world-leaders in biobanking with respect to both the number of its biobanks and the amount of material held by them, and in terms of its internationally knowledged expertise. In recent years, several important nationwide initiatives have been undertaken to organize and professionalize biobanking, including the String of Pearls Initiative (PSI), the European Population Imaging Infrastructure (EPI2), and the Translational Research IT project of the Centre for Translational Molecular Medicine (CTMM-TraIT). BBMRI-NL (Biobanking and BioMolecular Research Infrastructure Netherlands) was established to align, connect, complement and enrich biobanks, and to lay the groundwork for a robust national biobank facility. The first phase of BBMRI-NL (BBMRI-NL1.0; 2009-present) was highly successful and united 193 Dutch biobanks (population and clinical), jointly containing materials and data from >900,000 individuals, ~13 million biobanked samples, and a wide spectrum of accessory data. It lay the foundation for a well-organized national biobanking infrastructure for Dutch biomedical research. BBMRI-NL is the Dutch hub of the BBMRI ERIC (BBMRI European Research Infrastructure Consortium) and is closely aligned with major European initiatives and ‘Grand Challenges’ in the European Framework programme (e.g. Healthy Aging in Horizon 2020), and national initiatives, like the Life Sciences & Health ‘top sector’. With the recent complementary initiatives of EPI2 and CTMM-TraIT and major extra funding for data collection in specific sub-populations (notably the ‘Deltaplan Dementia’), the time has come to make the next decisive step towards a truly nationally integrated ‘NL Biobank Research Facility’ with BBMRI-NL2.0. In the future, biobanking will increasingly be integrated with health care. BBMRI-NL 2.0 will allow biomedical researchers to contribute to ‘4P’ medicine by linking diverse data sets through coordinated access to biomedical resources, technologies, standards and know-how, supported with cutting-edge IT systems and tools, and by providing tools for the standardization and harmonization of data, and its long-term storage. BBMRI-NL2.0 presents a unique opportunity to bring together Dutch biobank and imaging collections that are among the largest in Europe, building on proven success and extensive expertise in the compilation and analysis of such extensive datasets. BBMRI-NL2.0 will enable fully integrated access for research on how genetic and environmental factors contribute to disease. The research results from BBMRI-NL2.0 will drive new and improved ways to diagnose and predict disease, and highlight factors critical to disease prevention, healthy ageing or optimal development, and thus to the quality of life. It will cement the Netherlands’ leading position in biobank-based biomedical research. The envisioned NL-Biobank, with its content ranging from genes, molecules and images to their clinical cognate, will provide a unique repository of integrated data that optimally prepares the Netherlands for the challenges of Horizon 2020 and makes BBMRI-NL2.0 a highly visible and attractive partner for international collaborations.

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