Registry of clinical cancer cohorts for translational research at NCT/UCC Dresden and beyond
Registry Trial Platform
Figure: Datalinkage at the NCT/UCC Registry Trial Platform including a pseudonymisation service involving the independent trustee office of the TU Dresden
The aim of the project is to establish a comprehensive disease-related retrospective and prospective data collection for each patient in the style of published ICHOM standard sets for oncological diseases. It includes clinical, patient-reported, healthcare insurance and registry data. Use of intelligent IT solutions and data warehouse technologies minimizes the effort required from the clinical staff. There is no need for additional elaborate clinical documentation. A core team was established to take responsibility for all processes, organizing and carrying out follow-up appointments and ensuring high data integrity.
We are assembling prospective clinical cancer cohorts to better understand the outcomes in routine care and promote back translation of study findings to accelerate medical innovation for patients.
We are starting with four cancer-specific cohorts (colorectal, pancreatic, head and neck and multimodal tumors) and making a comprehensive, high-quality dataset available for these oncological clinical settings as a prototype for further clinical cohorts at NCT/UCC Dresden and beyond.
Background
Cancer is the most common cause of death for middle-aged men and women in Germany and the second leading cause of death for children and adolescents. Innovative treatments are likely to modify cancer into a chronic rather than fatal disease in increasing numbers of patients. Therefore, ensuring the provision of high-quality, patient-centered care is a major challenge for the healthcare system. The analysis of prospective cohorts combines controlled, prospective observations with data on routine patient care as a method of translational research. Furthermore, clinical cohorts and registries serve as an excellent basis for embedding clinical studies. Back translation of the findings from healthcare research through prospective cohort studies into clinical research has the potential to advance medical innovation faster, more effectively and above all more purposefully. Therefore, it must be a central component of cutting-edge oncological research. The goal of the Registry Trial Platform is to provide an optimal data basis for this kind of research.
Figure: Structure of the NCT/UCC Core Unit – Registry Trial Platform: The unit consists of three pillars, a) the information technology implementation, b) the actual management of the cohorts, including follow-up appointments, and c) the management of data
Head
Prof. Dr. med. Jochen Schmitt
NCT/UCC Dresden
and
Center for Evidence-Based Healthcare, Medical Faculty Carl Gustav Carus, TU Dresden
Tel.: +49(0)351 4586495
E-Mail: jochen.schmitt(at)uniklinikum-dresden.de
Coordination
Dr. rer. nat. Thomas Datzmann
NCT/UCC Dresden
Tel.: +49(0)351 4586498
E-Mail: thomas.datzmann(at)nct-dresden.de
Staff
Dr. rer. nat. Olaf Schoffer (Oncological Health Service Research)
Center for Evidence-Based Healthcare, Medical Faculty Carl Gustav Carus, TU Dresden
Tel.: +49(0)351 4586494
E-Mail: olaf.schoffer(at)uniklinikum-dresden.de
Heiko Böhme (IT Coordinator)
NCT/UCC Dresden
Tel.: +49(0)351 4584127
E-Mail: heiko.böhme(at)nct-dresden.de
Andrea Kloß (Medical Documentation Assistant)
NCT/UCC Dresden
Tel.: +49(0)351 4583073
E-Mail: andrea.kloss(at)nct-dresden.de
Lisa Dunst (Medical Documentation Assistant)
NCT/UCC Dresden
E-Mail: lisa.dunst(at)nct-dresden.de
