Registry Trial Platform

Registry of clinical cancer cohorts for translational research at the NCT/UCC Dresden and beyond

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, health care insurance and registry data. A minimum effort of the clinical staff, without the need for additional elaborate clinical documentation, can be achieved thanks to the use of intelligent IT solutions and data warehouse technologies. A core team was established to take responsibility for all processes, organizing and carrying out follow-up appointments and ensure 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 make a comprehensive, high-quality data set available for these oncological clinical settings as a prototype for further clinical cohorts at the 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 more and more patients. Therefore, ensuring the provision of high-quality, patient- centered care is a major challenge for the health care 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. A back translation of the findings from health care 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 oncological cutting-edge research. The Registry Trial Platform has the goal to provide the 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

Maria Block (Medical Documentation Assistant)
NCT/UCC Dresden
E-Mail: maria.block(at)uniklinikum-dresden.de