The UCT Tumor Documentation has established a centralized data collection of all UCT cancer patients (UCT clinical cancer registry) and provides data analysis and regular reporting to clinical departments for certification, quality management and research purposes (Real World Evidence studies). The tumor documentation is performed by trained medical documentation specialists and documentation assistants and in accordance with all relevant regulations for data protection. Follow-up is centrally organized in the UCT to reach a maximum of coverage.
The UCT clinical cancer registry has implemented the IT system Gießener Tumor Documentation System (GTDS) and all data are centrally documented, thereby unifying and standardizing documentation (with the exception of ODSeasy in the Breast Cancer Center). Simultaneously, the clinical information system (ORBIS) has been electronically adapted to transfer patient data and parts of structured clinical information into GTDS.
At the University Hospital Frankfurt, since 2012 all patients diagnosed with cancer are fully documented in GTDS as inpatients and outpatients, with documentation of their complete history, diagnostic workup, (multimodality) treatment and follow-up information. This includes all basic data as defined in the “ADT / GEKID Basisdatensatz”. Additionally, extensions have been consented within each clinical department. At the Nordwest Hospital, extensive tumor documentation was started in 2014.
The UCT clinical cancer registry evaluates quality indicators and key data for the “Oncology Center” and “Organ Cancer Centers” certified by the DKG (Deutsche Krebsgesellschaft). Quarterly metrics are reported to clinical departments. Importantly, the data is used to monitor patient outcome, for research purposes and clinical trial documentation.
Baseline epidemiological data as well as clinical cancer registry data are transferred at regular intervals to the clinico-epidemiological cancer registry of the state of Hesse (Hessisches Krebsregister), which returns mortality data back to the UCT cancer registry, thereby increasing follow-up data and allowing survival analyses.
Real world data provide insights to standard treatments and outcomes in the every-day setting. This way, real world evidence studies can help to address clinical research questions by extending the knowledge gained from traditional clinical research.
The UCT clinical cancer registry includes detailed data on the treatment pathways from patients treated at the University Hospital Frankfurt. Upon request and requiring approval by the oncological scientific board, the ethical committee, and the data protection office, data sets may be provided for research.