The research infrastructures in the NUM
NUM research infrastructures support researchers with methodological expertise, data management and high-quality research data
At the beginning of the COVID-19 pandemic, there was a widespread lack of the necessary platforms to collect and store treatment data and biosamples in a structured manner across institutions and make them available for research. For this reason, research and data infrastructures were either set up from scratch in several NUM projects (e.g. the RACOON image data platform) or existing ones were expanded (e.g. the NUKLEUS clinical study platform).
As medical research data is extremely heterogeneous, there can be no "one size fits all" infrastructure solution for clinical research data. Accordingly, the NUM has set up research infrastructures for different types of data, different ways of obtaining data and different treatment settings. To ensure that these partial solutions complement each other optimally and are compatible at their interfaces, they all work on the basis of the FAIR (Findable, Accessible, Interoperable, and Reusable) principles.
Implementation is in the hands of nationwide interdisciplinary expert networks, each of which contributes specific expertise on certain types of data (e.g. imaging data, autopsy data, emergency admission data) to the NUM. The resulting research infrastructures are used by the NUM research projects and will also support researchers outside the NUM in their research projects in the future.
There are currently seven research infrastructures in the NUM(AKTIN@NUM | GenSurv | NATON 2.0 | NUKLEUS | NUM-DIZ | NUM-RDP | RACOON), each with a different focus. A central task of the NUM is to provide these research infrastructures on a permanent basis and to continuously develop them further. This includes the further expansion of the NUM platforms into a Germany-wide data space for all types of clinical research data. This should be widely available for use by the scientific community in line with the open science concept.
Mission of the NUM FIS
"We operate a transparent, user-friendly and scalable infrastructure that is founded on trust-based collaboration and interdisciplinary expertise and provides researchers with the best possible support for multi-centre collaborative projects along the whole research process.
To this end, we provide researchers with a comprehensive portfolio of instruments and services to collect high-quality research data and biosamples. We make these available to the scientific community based on the FAIR principles as well as legal, organizational and technical standardization and harmonization. This enables us to gain scientific knowledge that leads to improved prevention and treatment of diseases and thus con-tributes to people's health."
A key component for the realisation of this vision is the establishment of a data room for clinical research data in Germany. In the future, this data room must contain all types of clinical research data. This applies regardless of whether it is data from routine clinical care or data collected in addition to routine documentation in clinical studies.
In order to realise this vision, the "Research Infrastructures Steering Group" was set up for the overarching management and further development of NUM research infrastructures. It ensures that further infrastructure development is carried out by researchers for researchers and that the needs of research data users are taken into account as much as possible.
