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Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network

The significance of human biorepositories for modern medical research, particularly for comprehensive population-based genetic analyses, is constantly growing. While large and centralized institutions are usually considered best suited to meet the increasing demand for high-quality “biobanks,” most...

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Autores principales: Lieb, Wolfgang, Jacobs, Gunnar, Wolf, Andreas, Richter, Gesine, Gaede, Karoline I., Schwarz, Jeanette, Arnold, Norbert, Böhm, Ruwen, Buyx, Alena, Cascorbi, Ingolf, Franke, Andre, Glinicke, Christine, Held-Feindt, Janka, Junker, Ralf, Kalthoff, Holger, Kramer, Hans-Heiner, Leypoldt, Frank, Maass, Nicolai, Maetzler, Walter, May, Sandra, Mehdorn, H. Maximilian, Röcken, Christoph, Schafmayer, Clemens, Schrappe, Martin, Schreiber, Stefan, Sebens, Susanne, Stephani, Ulrich, Synowitz, Michael, Weimer, Jörg, Zabel, Peter, Nöthlings, Ute, Röder, Christian, Krawczak, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754520/
https://www.ncbi.nlm.nih.gov/pubmed/30927239
http://dx.doi.org/10.1007/s12687-019-00417-8
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author Lieb, Wolfgang
Jacobs, Gunnar
Wolf, Andreas
Richter, Gesine
Gaede, Karoline I.
Schwarz, Jeanette
Arnold, Norbert
Böhm, Ruwen
Buyx, Alena
Cascorbi, Ingolf
Franke, Andre
Glinicke, Christine
Held-Feindt, Janka
Junker, Ralf
Kalthoff, Holger
Kramer, Hans-Heiner
Leypoldt, Frank
Maass, Nicolai
Maetzler, Walter
May, Sandra
Mehdorn, H. Maximilian
Röcken, Christoph
Schafmayer, Clemens
Schrappe, Martin
Schreiber, Stefan
Sebens, Susanne
Stephani, Ulrich
Synowitz, Michael
Weimer, Jörg
Zabel, Peter
Nöthlings, Ute
Röder, Christian
Krawczak, Michael
author_facet Lieb, Wolfgang
Jacobs, Gunnar
Wolf, Andreas
Richter, Gesine
Gaede, Karoline I.
Schwarz, Jeanette
Arnold, Norbert
Böhm, Ruwen
Buyx, Alena
Cascorbi, Ingolf
Franke, Andre
Glinicke, Christine
Held-Feindt, Janka
Junker, Ralf
Kalthoff, Holger
Kramer, Hans-Heiner
Leypoldt, Frank
Maass, Nicolai
Maetzler, Walter
May, Sandra
Mehdorn, H. Maximilian
Röcken, Christoph
Schafmayer, Clemens
Schrappe, Martin
Schreiber, Stefan
Sebens, Susanne
Stephani, Ulrich
Synowitz, Michael
Weimer, Jörg
Zabel, Peter
Nöthlings, Ute
Röder, Christian
Krawczak, Michael
author_sort Lieb, Wolfgang
collection PubMed
description The significance of human biorepositories for modern medical research, particularly for comprehensive population-based genetic analyses, is constantly growing. While large and centralized institutions are usually considered best suited to meet the increasing demand for high-quality “biobanks,” most medical research institutions still host rather heterogeneous and fragmented biobanking activities, undertaken by clinical departments with oftentimes rather different scientific scope. Undoubtedly, most clinicians and medical researchers would appreciate infrastructural support in terms of the storage and handling of their biosamples, but they are also likely to expect access to their samples avoiding extensive formal requirements. We report on the establishment of the PopGen 2.0 Network (P2N), an overarching alliance of initially seven biobanks from Northern Germany which adopted a joint but lean governance structure and use-and-access policy for their samples and data. In addition, the members of P2N have pursued an intense collaboration on ethical, legal and social issues and maintain a common IT infrastructure. The implementation of P2N has substantially improved the prospects of biobank-based research at the participating institutions. The network may thus serve as a role model for similar initiatives geared at linking pre-existing biorepositories for the benefit of research quality, efficiency, and transparency.
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spelling pubmed-67545202019-10-07 Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network Lieb, Wolfgang Jacobs, Gunnar Wolf, Andreas Richter, Gesine Gaede, Karoline I. Schwarz, Jeanette Arnold, Norbert Böhm, Ruwen Buyx, Alena Cascorbi, Ingolf Franke, Andre Glinicke, Christine Held-Feindt, Janka Junker, Ralf Kalthoff, Holger Kramer, Hans-Heiner Leypoldt, Frank Maass, Nicolai Maetzler, Walter May, Sandra Mehdorn, H. Maximilian Röcken, Christoph Schafmayer, Clemens Schrappe, Martin Schreiber, Stefan Sebens, Susanne Stephani, Ulrich Synowitz, Michael Weimer, Jörg Zabel, Peter Nöthlings, Ute Röder, Christian Krawczak, Michael J Community Genet Original Article The significance of human biorepositories for modern medical research, particularly for comprehensive population-based genetic analyses, is constantly growing. While large and centralized institutions are usually considered best suited to meet the increasing demand for high-quality “biobanks,” most medical research institutions still host rather heterogeneous and fragmented biobanking activities, undertaken by clinical departments with oftentimes rather different scientific scope. Undoubtedly, most clinicians and medical researchers would appreciate infrastructural support in terms of the storage and handling of their biosamples, but they are also likely to expect access to their samples avoiding extensive formal requirements. We report on the establishment of the PopGen 2.0 Network (P2N), an overarching alliance of initially seven biobanks from Northern Germany which adopted a joint but lean governance structure and use-and-access policy for their samples and data. In addition, the members of P2N have pursued an intense collaboration on ethical, legal and social issues and maintain a common IT infrastructure. The implementation of P2N has substantially improved the prospects of biobank-based research at the participating institutions. The network may thus serve as a role model for similar initiatives geared at linking pre-existing biorepositories for the benefit of research quality, efficiency, and transparency. Springer Berlin Heidelberg 2019-03-29 2019-10 /pmc/articles/PMC6754520/ /pubmed/30927239 http://dx.doi.org/10.1007/s12687-019-00417-8 Text en © The Author(s) 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Lieb, Wolfgang
Jacobs, Gunnar
Wolf, Andreas
Richter, Gesine
Gaede, Karoline I.
Schwarz, Jeanette
Arnold, Norbert
Böhm, Ruwen
Buyx, Alena
Cascorbi, Ingolf
Franke, Andre
Glinicke, Christine
Held-Feindt, Janka
Junker, Ralf
Kalthoff, Holger
Kramer, Hans-Heiner
Leypoldt, Frank
Maass, Nicolai
Maetzler, Walter
May, Sandra
Mehdorn, H. Maximilian
Röcken, Christoph
Schafmayer, Clemens
Schrappe, Martin
Schreiber, Stefan
Sebens, Susanne
Stephani, Ulrich
Synowitz, Michael
Weimer, Jörg
Zabel, Peter
Nöthlings, Ute
Röder, Christian
Krawczak, Michael
Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title_full Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title_fullStr Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title_full_unstemmed Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title_short Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
title_sort linking pre-existing biorepositories for medical research: the popgen 2.0 network
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754520/
https://www.ncbi.nlm.nih.gov/pubmed/30927239
http://dx.doi.org/10.1007/s12687-019-00417-8
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