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Research Data Management
The evaluation of population-based and regional data on the incidence, risk factors, diagnosis, and treatment of cancer is a central and patient-oriented form of cancer research.
Epidemiology and tumor documentation are central components of cancer research and involve the systematic collection and evaluation of cancer data. Tumor documentation as systematic research data management involves the collection of standardized patient data on diagnosis, therapy, and progression, often in clinical cancer registries, in order to evaluate the quality of treatment outcomes and processes. Health care research then uses this data to analyze the frequency, distribution, and causes of cancer in the population and to evaluate cancer screening program.
Further Information on:
Epidemiological Projects
National Cohort (NaKo)
The National Cohort (NaKo) is a nationwide long-term health study involving 200,000 adults. If you are interested in participating in this health study or would like to find out more about NaKo in Hamburg, please visit the following link:
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Hamburg City Health Study (HCHS)
The Hamburg City Health Study (HCHS) is the largest single-center long-term medical study in the world. This study was initiated by the University Medical Center Hamburg-Eppendorf - by Hamburg residents for Hamburg residents - to contribute to the health of the city. Further information:
Research Data Management
The mission of this UCC Hamburg Core Facility, headed by Dr. rer. biol. hum. Stefan Bartels, is to evaluate biomedical and health data using quantitative and computer-assisted analyses. We apply methods of biomedical informatics and biostatistics to integrate and analyze data from researchers at UCC Hamburg.
Clinical Communication Platform
The German Consortium Research Platform German Cancer Aid Translational Cancer Research Center (DKTK) is an association of partner sites in Germany that are committed to translational cancer research. The goals of the DKTK include improving the diagnosis and treatment of cancer by promoting interdisciplinary research and close cooperation between research institutions, clinics, and industry.
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The central element of this research network is the Clinical Communication Platform (CCP-IT). This innovative technology was developed as part of the German Consortium for Translational Cancer Research (DKTK). It provides a platform that specializes in enabling secure and efficient communication and collaboration between clinical partners and research institutions in cancer research. The CCP-IT aims to optimize data exchange, study management, and the coordination of clinical trials in order to promote translational cancer research and improve the treatment of cancer patients. The University Cancer Center Hamburg (UCC Hamburg) is also part of this important research network.
Further information on the CCP explorer and registration options (for scientists):
Observational Health Data Science and Informatics
Observational Health Data Science and Informatics (OHDSI) is an international collaboration dedicated to using observational data from health research to improve patient care and support evidence-based decision-making in healthcare. OHDSI provides an open platform for researchers, clinicians, and data scientists to access standardized, interoperable data sources and apply advanced analytical methods.
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By developing and implementing common standards such as the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM), OHDSI enables large-scale, networked studies based on real patient information. The aim is to gain insights into disease patterns, treatment outcomes, and the impact of interventions in order to have a lasting impact on healthcare systems worldwide.
Contact
If you have any questions about research data management, please contact:
Further Information
Clinical Cancer Registry
In addition to researching the incidence and risk factors for cancer, the University Cancer Center Hamburg (UCC Hamburg) has also set itself the goal of ensuring the existing quality of oncological care. An important tool for this is the UCC Hamburg's Clinical Cancer Registry, which collects information on the quality of treatment and can be used to develop and review measures for quality improvement.
The Clinical Cancer Registry is the central documentation center within the University Medical Center Hamburg-Eppendorf (UKE) for storing medical data on tumor patients who are treated in cooperating clinics at the UKE.
Through its documentation of the course of treatment, the Clinical Cancer Registry plays a key role in quality control and quality assurance in the field of oncology. In addition, data from the Clinical Cancer Research Registry, a separate database for research purposes, can be used for specific scientific questions and research projects. The main objective of our Clinical Cancer Registry is therefore the continuous improvement of the treatment of tumor diseases.
The Gießen Tumor Documentation System (GTDS) has been used for tumor documentation at the UKE since 2010. Approximately 3,000 new initial diagnoses are recorded each year. To this end, our employees review data from an average of 100 patients with a tumor diagnosis or suspected tumor diagnosis every day.
As part of the legal development of early cancer detection and quality assurance through clinical cancer registries (Early Cancer Detection and Registry Act, April 9, 2013), the data of all cancer patients is collected and sent to the respective state cancer registry - in this case, the Hamburg Cancer Registry - in compliance with data protection regulations.
The Clinical Cancer Registry has been responsible for the entire UKE for the statutory mandatory reports to the Hamburg Cancer Registry since July 2014.
In order to ensure the long-term quality of tumor treatment, numerous clinics and centers at the UKE are audited by the independent institute OnkoZert on behalf of the German Cancer Society (DKG) as part of a certification system. The Clinical Cancer Registry supports the institutions in the certification process by, among other things, providing aggregated key figures on primary tumor cases, therapies, and progress.
The following organ cancer centers are currently supported by the Clinical Cancer Registry:
- Oncology Center
- Sarcoma Center
- Head and Neck Tumor Center
- Colorectal Cancer Center
- Pancreatic Cancer Center
- Liver Cancer Center
- Esophageal Cancer Center
- Breast Center
- Gynecological Cancer Center
- Skin Tumor Center
- Bladder Tumor Center
- Kidney Tumor Center
- Center for Personalized Medicine - Oncology
- Center for Hematological Neoplasms
In addition, the Clinical Cancer Registry supports the UKE clinics in answering internal quality questions within the framework of internal quality rounds and structured dialogues.
In its role as a research registry, the Clinical Cancer Registry provides pseudonymized data for specific scientific questions and oncological health care research projects.
Based on Sections 12 and 12a of the Hamburg Hospital Act (HmbKHG), data is used for research purposes within a narrow scope after written consent has been obtained from patients.
Services Provided by the Clinical Cancer Registry
In light of changing requirements for the registration of tumor data, the Clinical Cancer Registry performs various tasks. It currently sees itself in the following roles:
- a registration registry,
- a quality registry, and
- a research registry.
If you have any questions or require further information, please send us an email at
Clinical and Genetic Cancer Epidemiology
An important task of cancer epidemiology is to conduct research projects to identify risk factors for cancer with the aim of translating new findings into concepts for cancer prevention.
The University Cancer Center Hamburg (UCC Hamburg) is also conducting large-scale epidemiological projects to investigate the influence of lifestyle factors and genetic factors on the risk of cancer and other chronic diseases.
Clinical epidemiological studies investigate the influence of genetic and non-genetic factors (e.g., lifestyle factors) on both cancer risk and prognosis after a cancer diagnosis.
In addition, new epidemiological and molecular biological methods are being used to identify risk markers and prognostic factors for disease recurrence. The studies are primarily conducted in national and international interdisciplinary collaborations, in which clinicians and scientists from various fields of basic medical and biological sciences work together.
The results of the studies should help to identify high-risk groups for targeted early detection programs and individually tailored therapies for cancer patients.
Ethics and Law
The University Cancer Center Hamburg (UCC Hamburg) has a unique combination of scientists and experts who analyze the effects and framework conditions of modern cancer medicine from an ethical and medical-legal perspective according to scientific criteria.
The development of cancer medicine is characterized by increasing complexity. This goes hand in hand with the need to continually re-examine ethical issues. These can arise, for example, from different perspectives of patient groups on the benefits of cancer therapies or from the evaluation of conflicting decisions.
These considerations and innovative therapy concepts may also have implications for medical law that need to be analyzed. Various research projects on these topics are being carried out in close collaboration between physicians, sociologists, medical lawyers, the Clinical Cancer Research Registry, and the Hamburg Cancer Registry.
Legal Framework for Tumor Boards:
The use of tumor boards and interdisciplinary discussions of cancer patients has become standard medical practice. This raises various medical law issues, such as how to ensure proper implementation. This includes aspects of data protection, medical responsibility, and liability. These issues are currently being addressed on behalf of the Germany-wide CCC network of leading oncology centers under the leadership of the UCC Hamburg and will be made available as recommendations for action for all tumor centers.
Further Information
Do you have any questions or would you like to make an appointment? Here you will find our contact details for UCC Hamburg.
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