Translational Medicine Data Catalogue
(A joint effort between IMI-eTRIKS and ELIXIR-Luxembourg)
Translational research scientists want to know what project study descriptions are available for disease areas and access the existing knowledge landscape. eTRIKS Data Catalogue will be a metadata repository linking the massive data available in a global system that can be optimally leveraged to improve biomedical research. The Data Catalogue will be interfaced with web-based software to enable remote, interactive data-mining such that important metadata and summaries of curated studies can be displayed. The idea would be to have a 'one stop shop' to show the datasets that are available in IMI, H2020 projects and other projects or published sources and let us help partners to promote the solution and encourage to share data. This will create value for public and private organisations/ translational researchers and drive research collaboration formation towards convergence and precision medicine.
There was no such thing as a Data catalogue for large research initiatives such as IMI and H2020 that centralizes metadata of ongoing and past projects. It is part of the service that eTRIKS provides in its key knowledge management performance to bring power to the FAIR data concept starting with a focus on the findability of project level metadata.
The registry has been built up from the user perspective. Users confirm that the pilot is useful and want to give us their metadata. The framework is based on the recognition of value and the level of content. Software should meet users needs and keep it simple as possible. A scope is defined in parallel with creation of rough timeline.
We performed a lean process to generically develop the catalogue based on product-solution fit interviews that revealed the value and feasibility of the approach from a technical and a data gathering angle and enabled us to build a template data tree in a joined eTRIKS-UL-ELIXIR collaboration. Next, bringing back this template allowed us to validate the build concept from the user (project coordinator) perspectives and make adjustments wherever required. Alongside these developments the data catalogue pilot version was developed and is getting populated gradually with more and more projects.
Most projects are aware about eTRIKS. Interestingly there is a need to help understand that with this catalogue eTRIKS is focussing on making metadata (data describing studies) findable for translational researchers. Once made clear the concept was very well received and project coordinators/ managers could see the benefit and added value. Non-basic research projects such as the CSA project interviewed expressed the value if this would have available already and supported the initiative widely. Most often and rather unexpectedly only couple coordinators were aware about the FAIR concept. Generally, the projects were interested in either receiving the report and template with recommended level of study descriptions to bring back to the catalogue, happy to participate from scratch as their projects are focussing on open and accessibility, or even willing to link their existing ‘niche research area’ register to implement in the repository. Projects understand we are focussing on the F in FAIR and see the template and first version as nice development. Projects coordinator think it is very useful and show interest in being updated about the advancements we make. Generally, the projects were interested in either receiving the report and template with recommended level of study descriptions to bring back to the catalogue, happy to participate from scratch.
Data Catalogue will directly impact the range of sources and ease with which projects can access data sources. With the eTRIKS Data Catalogue, researchers will be able to create awareness and recognition of their data contribution and demonstrate value of partner projects. Users will have the opportunity to find and access selected datasets. The repository will fuel dissemination of results with better outcomes for research projects as well as driving success for patients in the medical landscape.
The support from IMI having new and retrospective projects to suggest filling in the catalogue will be of great value to leverage the benefits for all stakeholders.