Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study: A Large Multicenter Clinical Biobank with Standardized Collection and Storage
van Os, H.J.A.; Ruigrok, Y.M.; Manniën, Judith; van Dijk, E.J.; Koudstaal, Peter J.; Luijckx, Gert Jan; Nederkoorn, Paul J.; Oostenbrugge, Robert J.; Visser, M.C.; Kappelle, LJ; Algra, A; Wermer, Marieke J H
(2018) Open Journal of Bioresources, volume 5, pp. 1 - 8
(Article)
Abstract
The Dutch Parelsnoer Institute-Cerebrovascular accident (CVA) Study is part of the Parelsnoer Institute (PSI), initiated in 2007 by the Netherlands Federation of University Medical Centers (NFU). PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniformly and standardized
... read more
storage of biomaterials for complex diseases. Currently, PSI covers 18 disease-specific cohorts called ‘Pearls’, and this number is still growing. One of these cohorts is the Stroke or CVA Pearl. For each of the cohorts, PSI offers the UMCs an infrastructure and standard procedures for storing the specific biomaterials in their certified biobanks. Clinical data are stored in a central database after being pseudonymized to ensure patient privacy. For the Parelsnoer Institute-CVA Study, blood for genetic analysis, serum and plasma are collected according to nationally agreed standards. Currently (November 2017) the Stroke Pearl has stored blood samples with prospectively obtained clinical data of around 6000 patients in all UMCs combined. Blood samples and data are available for all researchers with a methodologically valid research proposal.
show less
Download/Full Text
Keywords: Clinical biobanking, Harmonized standards, Health innovation, International security, Privacy standards, Stroke, Technical and organizational interoperability, Translational medical research, Medicine (miscellaneous), Biochemistry, Genetics and Molecular Biology (miscellaneous), Health Informatics, Cell Biology, Health Information Management
Note: Funding Information: Funding statement: PSI was founded in 2007 with a five year grant from the Dutch Government. From 2011 until now PSI is funded and facilitated by the Netherlands Federation of University Medical Centers (NFU) and its member institutions, independent of external funds. Additional funds from governmental sources, industry sponsors and charity are used for the analysis on the existing data and the expansion of PSI with new diseases. Funding Information: Keywords: Stroke; harmonized standards; clinical biobanking; translational medical research; health innovation; technical and organizational interoperability; international security and privacy standards Funding statement: PSI was founded in 2007 with a 1謀ve year grant from the Dutch Government. From 2011 until now PSI is funded and facilitated by the Netherlands Federation of University Medical Centers (NFU) and its member institutions, independent of external funds. Additional funds from governmental sources, industry sponsors and charity are used for the analysis on the existing data and the expansion of PSI with new diseases. Publisher Copyright: © 2018 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.
(Peer reviewed)
