Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage

H. J. A. van Os; Y. M. Ruigrok; J. Manniën; E. J. van Dijk; P. J. Koudstaal; G. J. Luijckx; P. J. Nederkoorn; R. J. van Oostenbrugge; M. C. Visser; L. J. Kappelle; H. W. Verspaget; A. Algra; M. J. H. Wermer

doi:10.5334/OJB.41

Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage

H. J. A. van Os^*
, Y. M. Ruigrok
, J. Manniën
, E. J. van Dijk
, P. J. Koudstaal
, G. J. Luijckx
, P. J. Nederkoorn
, R. J. van Oostenbrugge
, M. C. Visser
, L. J. Kappelle
, H. W. Verspaget
, A. Algra
, M. J. H. Wermer

^*Corresponding author for this work

Leiden University Medical Center
University Medical Center Utrecht
Parelsnoer Institute, Utrecht, NL
Radboud University Medical Center
Erasmus MC
University of Groningen, University Medical Center Groningen
Amsterdam UMC - University of Amsterdam
Maastricht UMC+
Amsterdam UMC - Vrije Universiteit Amsterdam
VU Vrije Universiteit
University of Groningen

Research output: Contribution to journal › Article › Academic › peer-review

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 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.

Original language	English
Article number	8
Journal	Open Journal of Bioresources
Volume	5
DOIs	https://doi.org/10.5334/OJB.41
Publication status	Published - 2020

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Clinical biobanking
Harmonized standards
Health innovation
International security
Privacy standards
Stroke
Technical and organizational interoperability
Translational medical research

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10.5334/OJB.41

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van Os, H. J. A., Ruigrok, Y. M., Manniën, J., van Dijk, E. J., Koudstaal, P. J., Luijckx, G. J., Nederkoorn, P. J., van Oostenbrugge, R. J., Visser, M. C., Kappelle, L. J., Verspaget, H. W., Algra, A., & Wermer, M. J. H. (2020). Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage. Open Journal of Bioresources, 5, Article 8. https://doi.org/10.5334/OJB.41

@article{7f4b132ea5e74a1c9472115e8ec2b29e,

title = "Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage",

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 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.",

keywords = "Clinical biobanking, Harmonized standards, Health innovation, International security, Privacy standards, Stroke, Technical and organizational interoperability, Translational medical research",

author = "\{van Os\}, \{H. J. A.\} and Ruigrok, \{Y. M.\} and J. Manni{\"e}n and \{van Dijk\}, \{E. J.\} and Koudstaal, \{P. J.\} and Luijckx, \{G. J.\} and Nederkoorn, \{P. J.\} and \{van Oostenbrugge\}, \{R. J.\} and Visser, \{M. C.\} and Kappelle, \{L. J.\} and Verspaget, \{H. W.\} and A. Algra and Wermer, \{M. J. H.\}",

note = "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: {\textcopyright} 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/. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",

year = "2020",

doi = "10.5334/OJB.41",

language = "English",

volume = "5",

journal = "Open Journal of Bioresources",

issn = "2056-5542",

publisher = "Ubiquity Press",

}

van Os, HJA, Ruigrok, YM, Manniën, J, van Dijk, EJ, Koudstaal, PJ, Luijckx, GJ, Nederkoorn, PJ, van Oostenbrugge, RJ, Visser, MC, Kappelle, LJ, Verspaget, HW, Algra, A & Wermer, MJH 2020, 'Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage', Open Journal of Bioresources, vol. 5, 8. https://doi.org/10.5334/OJB.41

TY - JOUR

T1 - Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage

AU - van Os, H. J. A.

AU - Ruigrok, Y. M.

AU - Manniën, J.

AU - van Dijk, E. J.

AU - Koudstaal, P. J.

AU - Luijckx, G. J.

AU - Nederkoorn, P. J.

AU - van Oostenbrugge, R. J.

AU - Visser, M. C.

AU - Kappelle, L. J.

AU - Verspaget, H. W.

AU - Algra, A.

AU - Wermer, M. J. H.

N1 - 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/. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.

PY - 2020

Y1 - 2020

N2 - 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 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.

AB - 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 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.

KW - Clinical biobanking

KW - Harmonized standards

KW - Health innovation

KW - International security

KW - Privacy standards

KW - Stroke

KW - Technical and organizational interoperability

KW - Translational medical research

UR - https://www.scopus.com/pages/publications/85098513622

U2 - 10.5334/OJB.41

DO - 10.5334/OJB.41

M3 - Article

SN - 2056-5542

VL - 5

JO - Open Journal of Bioresources

JF - Open Journal of Bioresources

M1 - 8

ER -

Dutch parelsnoer institute-cerebrovascular accident (CVA) study: A large multicenter clinical biobank with standardized collection and storage

Abstract

UN SDGs

Keywords

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