A long and fruitful group effort has led to the first version of a new MIABIS extension for describing biobank samples and sample donors. The working group included experts from many different BBMRI-ERIC Member countries, and was coordinated by BBMRI.fi.
MIABIS stems from the words “Minimum Information About BIobank data Sharing”, and it was originally created in BBMRI.se, by Professor Jan-Eric Litton’s research group. MIABIS aims to standardize the data elements describing biobanks, research on samples and associated data, so that sharing data between biobanks will be easier. MIABIS Core, currently in its second version, contains data elements for describing biobanks, sample collections and studies. In MIABIS Core, the sample donors and samples are reported only at summary level, such as number of sample donors, types of available samples and data, etc. Now MIABIS has been extended with data elements to describe samples, sample donors, and events which are related to them.
For the development work, the working group used five use cases which deal with supporting specific queries made by researchers about availability of samples and data. The queries are based on real individual level data and therefore provide a new level of accuracy to the query results. To make these queries possible, common sets of data elements that describe samples and sample donors are needed.
The use cases included the UKCRC Tissue Directory, the German Biobank Alliance, RD-Connect, and AMC Biobank. Also BBMRI-ERIC’s upcoming Sample Locator Service served as one of the use cases.
The MIABIS extension is on purpose very simple and includes only few selected data elements to describe sample donors, samples, and events. The reason for this is that the model needed to be applicable to all the different use cases, which were heterogeneous. For sample donors, the data elements include only sex, birth year and categories of data linked to the given donor. For samples, the data elements were taken as much as possible from the existing Standard PREanalytical Code (SPREC) of ISBER. In addition to a detailed list of sample types, the data elements include information about sample storage temperature, anatomical source of the sample, and sample creation date. Importantly, also restrictions in the use of samples can be recorded in MIABIS. Each sample and sample donor can be linked to different events. For example, sampling events at which the specific sample was taken, or disease diagnosis event which is related to the sampling. Each event can also contain event-specific data elements.
The next step is implementing this MIABIS extension in the different use cases. In the implementation process, the usability of the current model will be tested, and it will be updated as needed. The work on MIABIS continues currently also by updating MIABIS Core to version 3, in order to better support data-driven biobanks.
To learn more about MIABIS, visit https://github.com/MIABIS/miabis/wiki
If you are interested in joining the MIABIS work group, please send an e-mail to firstname.lastname@example.org