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

被引:0
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作者
Wolfgang Lieb
Gunnar Jacobs
Andreas Wolf
Gesine Richter
Karoline I. Gaede
Jeanette Schwarz
Norbert Arnold
Ruwen Böhm
Alena Buyx
Ingolf Cascorbi
Andre Franke
Christine Glinicke
Janka Held-Feindt
Ralf Junker
Holger Kalthoff
Hans-Heiner Kramer
Frank Leypoldt
Nicolai Maass
Walter Maetzler
Sandra May
H. Maximilian Mehdorn
Christoph Röcken
Clemens Schafmayer
Martin Schrappe
Stefan Schreiber
Susanne Sebens
Ulrich Stephani
Michael Synowitz
Jörg Weimer
Peter Zabel
Ute Nöthlings
Christian Röder
Michael Krawczak
机构
[1] University Hospital Schleswig-Holstein UKSH,Institute of Epidemiology Kiel University and PopGen Biobank
[2] Kiel University,Institute of Medical Informatics and Statistics
[3] Kiel University,Division of Biomedical Ethics, Institute of Experimental Medicine
[4] Leibniz Lung Center for Medicine and Biosciences,BioMaterialBank Nord, Department of Medicine
[5] Kiel University,Institute of Clinical Chemistry
[6] Kiel University,Institute of Clinical Molecular Biology
[7] University Hospital Schleswig-Holstein Campus Kiel,Department of Gynecology and Obstetrics
[8] Kiel University,Institute of Experimental and Clinical Pharmacology
[9] University of Kiel,Ethics Committee of the Medical Faculty
[10] University Hospital Schleswig-Holstein Campus Kiel,Department of Neurosurgery
[11] Kiel University,Institute for Experimental Cancer Research
[12] University Hospital Schleswig-Holstein Campus Kiel,Department for Congenital Heart Disease and Pediatric Cardiology
[13] University Hospital Schleswig-Holstein Campus Kiel,Department of Neurology
[14] Kiel University,Institute of Pathology
[15] University Hospital Schleswig-Holstein Campus Kiel,Department of General and Thoracic Surgery
[16] University Hospital Schleswig-Holstein UKSH,Department of Pediatrics
[17] University Hospital Schleswig-Holstein Campus Kiel,Department of Internal Medicine I
[18] University Hospital Schleswig-Holstein Campus Kiel,Department of Neuropediatrics
[19] Leibniz Lung Center for Medicine and Biosciences,Department of Pneumology
[20] University of Bonn,Department of Nutrition and Food Sciences
来源
关键词
Biobank; Governance; Ethics; Data management; Quality assurance;
D O I
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中图分类号
学科分类号
摘要
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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页码:523 / 530
页数:7
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