Kurzfassung

The University Cancer Center (UCT Mainz), along with its partner site in Frankfurt (UCT Frankfurt), is one out of eight partners nationwide within the German Cancer Consortium (DKTK “Deutsches Konsortium für Translationale Krebsforschung”). By its Institute of Medical Biostatistics, Epidemiology, and Informatics (IMBEI), the UCT Mainz is a key provider within both, the DKTK subcommittes on Cancer Prevention, Detection, and Outcomes as well as the Clinical Communication Platform (CCP-IT).
...The University Cancer Center (UCT Mainz), along with its partner site in Frankfurt (UCT Frankfurt), is one out of eight partners nationwide within the German Cancer Consortium (DKTK “Deutsches Konsortium für Translationale Krebsforschung”). By its Institute of Medical Biostatistics, Epidemiology, and Informatics (IMBEI), the UCT Mainz is a key provider within both, the DKTK subcommittes on Cancer Prevention, Detection, and Outcomes as well as the Clinical Communication Platform (CCP-IT).
 
Cancer Prevention, Early Detection and Outcome Research
 
Within the framework “Cancer Prevention, Early Detection and Outcome Research” Frankfurt/Mainz has focused on outcome research. We develop von Patient Reported Outcomes (PRO) tools, including questionnaires measuring Quality of Life (QoL), and apply them in clinical and epidemiological studies. In 2013, we particularly investigated long-term QoL in lung cancer survivors and in patients with thyroid cancer.
Another area of research are late effects of malignant diseases and oncological treatment, for example cardiovascular sequelae of radiotherapy or second malignancies after childhood cancer. In 2013, a new project was installed funded by the German Federal Ministry of Education and Research: Personalized estimation of long-term outcomes after radiation exposure and orientation for radiation in medicine (PASSOS).
Furthermore, we support other DKTK partners investigating methods to improve early detection and prevention of colorectal cancer by helping them designing and analyzing their studies and by recruiting patients.
 
CCP-IT

The working group CCP-IT under leadership of the local medical Informatics consists out of at least one member of each DKTK consortium site. As result of the first funding period (2012-2015), an IT backbone for connecting all DKTK sites was created. It supports contributing data from local cancer documentations and biobanks to the consortium while still preserving each partner’s requirements for data sovereignty and data protection. Researchers are provided with two mechanisms to search the DKTK sites for patients or biosamples matching a given project proposal: A central search returns immediate results based on aggregated, narrow datasets, regularly transmitted to the CCP-IT. However, the main feature is the decentral search, which employs a federated bridgehead architecture to optionally include much broader datasets recorded even before the establishment of the DKTK. Especially in cases without an adequate patient consent, data does not leave the site without explicit approval of the local owner. A common data protection concept has been written and is already approved by the TMF in Berlin, attesting its compliance with German data protection requirements.
Some of the already running IT components are a bridgehead, running at each partners site, consisting of a local data management (“CentraXX Light” from Kairos GmbH) to store data, and a “Teiler” to make it available to the consortium (“Samply.Share” from IMBEI), central search tool from the dkfz. Furthermore there are a decentral search broker and several kinds of identity management tools based on the OpenSource software “Mainzelliste” to support privacy-preserving record linkage, as well as a metadata repository providing a “common tongue” and semantic interoperability among the consortium’s sites.» weiterlesen» einklappen