gms | German Medical Science

65th Annual Meeting of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), Meeting of the Central European Network (CEN: German Region, Austro-Swiss Region and Polish Region) of the International Biometric Society (IBS)

06.09. - 09.09.2020, Berlin (online conference)

BBMRI-ERIC Negotiator, a communication tool for biobanks and researchers

Meeting Abstract

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  • Robert Reihs - BBMRI-ERIC, Graz, Austria; Medical University of Graz, Diagnostic and Research Institute of Pathology, Graz, Austria
  • Petr Holub - BBMRI-ERIC, Graz, Austria

Deutsche Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie. 65th Annual Meeting of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), Meeting of the Central European Network (CEN: German Region, Austro-Swiss Region and Polish Region) of the International Biometric Society (IBS). Berlin, 06.-09.09.2020. Düsseldorf: German Medical Science GMS Publishing House; 2021. DocAbstr. 140

doi: 10.3205/20gmds078, urn:nbn:de:0183-20gmds0786

Veröffentlicht: 26. Februar 2021

© 2021 Reihs et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.


Gliederung

Text

Biobanks and other various biological resources are growing steadily and became an indispensable resource for research. Still, they are facing challenges to become findable and accessible for researchers and the public. The findability is tackled by multiple catalogs available – some general purpose (e.g., BBMRI-ERIC Directory, GBA Directory, Sample Locator), some specializing in specific areas (e.g., RD-Connect Biobank/Registry Finder) For the accessibility of biobanks a lot of different heterogeneous access procedures is still followed, mostly based on direct contact with individual identified biobanks. This is complex and tedious for the requesters. To overcome this problem the BBMRI-ERIC Negotiator service was implemented, to allow for efficient, streamlined access to all these resources.

The Negotiator is designed based on the “project – request – source query” hierarchy. This is to minimize the need for redundant filling of information (Project descriptions, affiliations, ...). A project can consist of multiple requests, each request can have more than on source query. The source query identifies candidate biobanks and collections, findable in different catalogs as mentioned above. Source queries from different sources can also be pooled together into one request. The communication between researchers/requestors, BBMRI-ERIC, and biobank representatives is structured via a state machine that complies with steps defined in the BBMRI-ERIC Access Policy.

The steps involved in the negotiation process starts with identifying candidate biobanks and thier collections of data and/or biological material. The researcher needs to fill basic information about the request (Purpose, anticipated analytics, ethics approvals). After filling the request, it is checked by an BBMRI-ERIC moderator whether the request is not violating terms and conditions of using the Negotiator service (e.g., spam or otherwise inappropriate request). When the request has been approved the group communication and request refinement phase started where the details about the request are specified and discussed. Also, private communication between the biobanks and the researcher is possible, allowing to exchange confidential information such as cost of access or contracting templates (MTAs/DTAs). When the details are clarified the biobanks can flag their availability of material in a standardized way: (a) data/material available and accessible for the given purpose and how many cases and samples are available; (b) data/material available but not accessible for the given purpose; and (c) data/material not available. Tracking information for shipping the samples can also be stored in the Negotiator so that delivery can be monitored. Once the research project is over, the researcher should indicate when the work in the project has finished. When data were generated in the project, that should be made available to the biobank, as required by the BBMRI-ERIC Access Policy; handling of data return is also supported by the Negotiator.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.