title: p-BioSPRE-an information and communication technology framework for transnational biomaterial sharing and access.
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.
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Ensheimer Strasse 48, 66386 St. Ingbert, Germany.
authors.forename: Gabriele
authors.initials: G
authors.lastname: Weiler
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Branch Potsdam-Golm, Am Mühlenberg 13, 14476 Potsdam-Golm, Germany.
authors.forename: Christina
authors.initials: C
authors.lastname: Schröder
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Ensheimer Strasse 48, 66386 St. Ingbert, Germany.
authors.forename: Fatima
authors.initials: F
authors.lastname: Schera
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Branch Potsdam-Golm, Am Mühlenberg 13, 14476 Potsdam-Golm, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Dobkowicz
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Ensheimer Strasse 48, 66386 St. Ingbert, Germany.
authors.forename: Stephan
authors.initials: S
authors.lastname: Kiefer
authors.affiliation: Fraunhofer Institute for Biomedical Engineering IBMT, Branch Potsdam-Golm, Am Mühlenberg 13, 14476 Potsdam-Golm, Germany.
authors.forename: Karsten R
authors.initials: KR
authors.lastname: Heidtke
authors.affiliation: Leibniz Universität Hannover, Institut für Rechtsinformatik, Königsworther Platz 1, 30167 Hannover, Germany.
authors.forename: Stefanie
authors.initials: S
authors.lastname: Hänold
authors.affiliation: Leibniz Universität Hannover, Institut für Rechtsinformatik, Königsworther Platz 1, 30167 Hannover, Germany.
authors.forename: Iheanyi
authors.initials: I
authors.lastname: Nwankwo
authors.affiliation: Leibniz Universität Hannover, Institut für Rechtsinformatik, Königsworther Platz 1, 30167 Hannover, Germany.
authors.forename: Nikolaus
authors.initials: N
authors.lastname: Forgó
authors.affiliation: Pediatric Haematology and Oncology, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Stanulla
authors.affiliation: Department of Paediatric Oncology/Haematology, Charité Universitätsmedizin Berlin, Campus Virchow Klinikum, Augustenburger Pl. 1, 13353 Berlin, Germany.
authors.forename: Cornelia
authors.initials: C
authors.lastname: Eckert
authors.affiliation: Universitätsklinikum des Saarlandes, Kirrberger Straße, 66421 Homburg, Germany.
authors.forename: Norbert
authors.initials: N
authors.lastname: Graf
keywords: IDB; ObTiMA; Trial Biomaterial Manager; biobank access; p-BioSPRE; p-biobank wrapper; specimen management