AG SUDO

Mission:

Our mission is to support innovative research and clinical trials through digital solutions and sustainable data infrastructures. We create secure and efficient processes to make scientific data accessible, usable and valuable for future research questions.

Through our work, we contribute to providing research institutions, scientists and doctors with optimal support for their projects and to shaping the use of medical data responsibly. Our goal is to promote the exchange of knowledge and thus advance the development of innovative approaches in cancer research.

Tasks:

The Secondary Use of Data in Oncology working group is responsible for supporting organizational units, researchers and physicians at both the DKFZ and the NCT in the implementation of studies and projects and to enable the secondary use of medical data.

We support the organizational units in both institutions in the organization and evaluation by developing and operating a tailor-made web portal for the submission, processing and assessment of study synopses with the NCT IIT Portfolio. Studies and projects can be continuously monitored and evaluated in specialized registries. These applications are gradually being rolled out in other translational networks of DKFZ, such as DKTK or HI-TRON. We also advise on regulatory requirements for the future secondary use of the generated data.

We support researchers and physicians in conducting studies and projects by providing advice, planning and configuring electronic documentation tools. Wherever possible, we rely on international standards for the documentation of medical data in order to comply with the FAIR Principles. The principles are designed to ensure that research data is Findable, Accessible, Interoperable and Reusable.

This data is to be made available for secondary scientific use beyond the original purpose of the project. To this end, we design, implement and operate cross-institutional IT structures that meet all (data protection and) legal requirements. We transfer the data to central data repositories, harmonize and standardize them and enrich them with additional data, e.g. from routine care, medical registers or health insurance companies.

This data should be findable and accessible for secondary users. To this end, we provide interfaces through which researchers can obtain information about the data and its relevance for their scientific questions (in compliance with data protection regulations) and apply for its secondary use. In the future, they will be able to work in a Trusted Research Environment, which we will set up in collaboration with units from the DKFZ and NCT. Until these options are available, we will offer the data in various formats following approval by the respective Use & Access Committee.

The working group is also scientifically active. It has developed the Knowledge Connector (KC) in close collaboration with experienced bioinformaticians and oncologists from the DKFZ Translational Medical Oncology and Computational Oncology departments. The KC supports the preparation and implementation of molecular tumor boards and has been used since February 2022 as part of the DKFZ/NCT/DKTK MASTER program. The KC is continuously being further developed. Its use in other institutions in Germany is in preparation.