FAIR* Data Management in the Clinical Research Unit 5002

Author: Theresa Bender, CP2

In the KFO5002 we are dealing with various data types from our different subprojects comprised of multiple departments. These data types span from simple tables over sequencing results to structured patient data. Exchanging the collected and measured data plays an important role in the consortium. For this, the reproducibility of the data is crucial - a FAIR (https://doi.org/10.1038/sdata.2016.18) data management offers this and much more.

The set-up of a suitable infrastructure for such data management is the responsibility of the Department of Medical Informatics, which has a leadership role in CP2. Firstly, different data sources need to be identified and made accessible in one place in a FAIR way. Data security and protection receive special attention considering the data types described before - finding the balance between data protection and the usability of the data is quite a challenge.

Due to the data integration resulting in complex network concepts, roles and rights for data usage as part of being FAIR need to be agreed upon by the entire consortium. Not only for usability of the data, but also possible publications, it is important for relevant metadata not only to be collected, but to be stored alongsidethe data itself in a suitable manner.

For the realization of the data management we count on established methods and tools, which have already been used successfully in earlier projects (https://doi.org/10.1055/s-0040-1709158). Currently we are focussing on setting up a FAIRDOM/SEEK repository (https://fairdomhub.org/). In addition to tutorials, we assist the consortium members with FAIR storage of their data. For first overview tables from CP1 as well as the sequencing workflow within CP2, we have already established SEEK as first point of contact for the consortium. To increase acceptance, a first version of a data policy was agreed upon. Following good experiences in the SFB 1190 (https://www.sfb1190.de/), this policy is expected to specify the ground rules for data sharing inside and outside the KFO, even beyond SEEK.

Of course, the set-up of a FAIR data management is no end in itself. Rather. the usage of the platforms should be fun and make the research work easier. In any case, we are happy to see positive developments in the number of active users as well as the inflow of data.

*Findable, Accessible, Interoperable, Reusable

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