Cargando…
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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
---|---|
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 |
_version_ | 1783453089754251264 |
---|---|
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. |
format | Online Article Text |
id | pubmed-6754520 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer Berlin Heidelberg |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT liebwolfgang linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT jacobsgunnar linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT wolfandreas linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT richtergesine linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT gaedekarolinei linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT schwarzjeanette linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT arnoldnorbert linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT bohmruwen linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT buyxalena linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT cascorbiingolf linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT frankeandre linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT glinickechristine linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT heldfeindtjanka linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT junkerralf linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT kalthoffholger linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT kramerhansheiner linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT leypoldtfrank linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT maassnicolai linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT maetzlerwalter linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT maysandra linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT mehdornhmaximilian linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT rockenchristoph linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT schafmayerclemens linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT schrappemartin linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT schreiberstefan linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT sebenssusanne linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT stephaniulrich linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT synowitzmichael linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT weimerjorg linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT zabelpeter linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT nothlingsute linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT roderchristian linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network AT krawczakmichael linkingpreexistingbiorepositoriesformedicalresearchthepopgen20network |