p-BioSPRE—an information and communication technology framework for transnational biomaterial sharing and access

Author(s)

Gabriele Weiler, Christina Schröder, Fatima Schera, Matthias Dobkowicz, Stephan Kiefer, Karsten R Heidtke, Stefanie Hänold, Iheanyi Nwankwo, Nikolaus Forgó, Martin Stanulla, Cornelia Eckert, Norbert Graf

Abstract

Biobanks represent key resources for clinico-genomic research and are needed to pave the way to personalised medicine. To achieve this goal, it is crucial that scientists can securely access and share high-quality biomaterial and related data. Therefore, there is a growing interest in integrating biobanks into larger biomedical information and communication technology (ICT) infrastructures. The European project p-medicine is currently building an innovative ICT infrastructure to meet this need. This platform provides tools and services for conducting research and clinical trials in personalised medicine. In this paper, we describe one of its main components, the biobank access framework p-BioSPRE (p-medicine Biospecimen Search and Project Request Engine). This generic framework enables and simplifies access to existing biobanks, but also to offer own biomaterial collections to research communities, and to manage biobank specimens and related clinical data over the ObTiMA Trial Biomaterial Manager. p-BioSPRE takes into consideration all relevant ethical and legal standards, e.g., safeguarding donors’ personal rights and enabling biobanks to keep control over the donated material and related data. The framework thus enables secure sharing of biomaterial within open and closed research communities, while flexibly integrating related clinical and omics data. Although the development of the framework is mainly driven by user scenarios from the cancer domain, in this case, acute lymphoblastic leukaemia and Wilms tumour, it can be extended to further disease entities.

Organisation(s)

External organisation(s)

Gottfried Wilhelm Leibniz Universität Hannover, Fraunhofer-Institut für Biomedizinische Technik IBMT, Medizinische Hochschule Hannover (MHH), Charité – Universitätsmedizin Berlin, Universitätsklinikum des Saarlandes

Journal

ecancermedicalscience

Volume

8

No. of pages

18

ISSN

1754-6605

DOI

https://doi.org/10.3332%2Fecancer.2014.401

Publication date

2014

Peer reviewed

Yes

Austrian Fields of Science 2012

505015 Legal informatics, 505010 Medical law, 505002 Data protection

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Portal url

https://ucris.univie.ac.at/portal/en/publications/pbiosprean-information-and-communication-technology-framework-for-transnational-biomaterial-sharing-and-access(a6bce0c1-9d4a-4bbc-8ff1-dbb788d538cc).html