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Naukowcy z Pracowni Biobank UŁ oraz Krajowego Ośrodka Wiodącego w Zakresie Biobankowania (EIT+), zaangażowani w realizację projektu BBMRI.pl, wraz z zespołami z innych krajów, pod patronatem BBMRI-ERIC  przygotowali artykuł dotyczący zwiększenia ponownego wykorzystania danych i materiałów biologicznych w badaniach medycznych: Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health. Praca została przyjęta do druku na łamach Biopreservation and Biobanking (IF=1,698).  Zapraszamy do lektury.

 

Holub P1, Kohlmayer F2, Prasser F2, Mayrhofer MT1, Schlünder I1,3, Martin GM4, Casati S5, Koumakis L6, Wutte A1, Kozera Ł7, Strapagiel D8, Anton G9, Zanetti G10, Sezerman OU11, Mendy M12, Valík D13, Lavitrano M5, Dagher G14, Zatloukal K15, van Ommen GB16, Litton JE1.

 
 1.  BBMRI-ERIC , Graz, Austria.
 2.  Technical University of Munich , Munich, Germany.
 3.  TMF e.V. , Berlin, Germany.
 4.  BBMRI.mt and University of Malta , Msida, Malta.
 5.  BBMRI.it and Universita degli Studi di Milano-Bicocca , Milano, Italy.
 6.  BBMRI.gr and Foundation for Research and Technology-Hellas , Heraklion, Greece.
 7.  BBMRI.pl and Wroclaw Research Centre EIT+ , Wroclaw, Poland.
 8.  BBMRI.pl and University of Łódź , Łódź, Poland.
 9.  Helmholtz Zentrum München , Munich, Germany.
10.  BBMRI.it and CRS4 , Pula, Italy.
11.  BBMRI.tr and Acibadem University , Istanbul, Turkey.
12.  BBMRI.IARC and International Agency for Research on Cancer , Lyon, France.
13.  BBMRI.cz and Masaryk Memorial Cancer Institute , Brno, Czech Republic.
14.  INSERM , Paris, France.
15.  BBMRI.at and Medical University Graz , Graz, Austria.
16. BBMRI.nl and Leiden University Medical Center , Leiden, Netherlands.

 

Streszczenie

The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability-entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)-are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently.