Patient Research Council NCT Berlin – Patient Involvement in Cancer Research
Our Mission: Integrating the Perspective of Patients Into Research
The National Center for Tumor Diseases (NCT) is a long-term cooperation between the German Cancer Research Center (DKFZ), excellent partners in university medical centers (UMCs) and other research institutions at various locations in Germany. The aim of the NCT is to translate innovations in cancer research in Germany into studies in a targeted and rapid manner in order to successfully diagnose and treat cancer while maintaining a high quality of life according to the latest state of research. Patients are research partners on an equal footing.
As part of the NCT Berlin at Charité – Universitätsmedizin Berlin, the Berlin Patient Research Council (PatFoR NCT Berlin) advocates for the systematic integration of the patient perspective into cancer research. PatFoR NCT Berlin is an independent advisory board composed of engaged patient representatives, which supports researchers in designing patient-centered studies. Its aim is to make research more practice-oriented, comprehensible, and needs-based, while promoting direct exchange between science, clinical practice, and patient advocacy.
Our Tasks
- Consulting and assisting research projects – Supporting researchers in integrating the patient perspective into their studies.
- Quality assurance and ethics – Advising study designs, patient information, and ethical questions from the patient's perspective.
- Mediating patient representatives for research projects – Building and maintaining a network of dedicated patient advocates for project-specific collaboration.
- Dialogue between research and practice – Promoting exchange between science, clinical care, and patient advocacy to shape research more real-world oriented.
For Whom Is Our Work Relevant?
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Researchers & Medical Professionals
Integrating the patient perspective is a key success factor for high-quality translational clinical research. Patient representatives help make research more practice-oriented and relevant by contributing their experiences with disease and care. PatFoR NCT Berlin supports researchers by:
- Formulating research questions based on patient needs.
- Designing patient-friendly studies to improve recruitment and to minimize dropout rates.
- Preparing patient materials in an understandable way to increase study acceptance.
- Identifying suitable patient representatives for research projects.
When should you contact us?
Already in the planning stage of your study, to benefit early from the patient perspective. We offer personalized consulting and feedback on study documents.
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Patients Who Wish To Participate in Research
Many cancer patients wish for research to better address their needs. But how can one get involved? As a patient, you have gathered valuable experiences with your disease and treatment. This perspective can help make research projects more practice-oriented and address questions that are truly relevant to those affected. PatFoR NCT Berlin helps you in finding a suitable form of engagement. This can mean giving feedback on informational materials, participating in discussion rounds with researchers, or actively contributing to the design of studies. You decide how much you would like to be involved.
Do I need to meet specific requirements?
No, you don’t need any medical knowledge. Your personal experiences are essential. If you would like to qualify further, you can participate in the Patient Expert Academy (PEAK), which offers free online courses on patient involvement in research.
What are the ways to get involved?
There are various ways to engage. Some examples include participating in surveys, reviewing study materials, or engaging as an advisory partner in research projects. Depending on your interests and availability, many other ways can be possible.
How can I get involved?
Contact us, and we’ll find the form of involvement for you together!
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Health Policy Stakeholders & Institutions
Sustainable patient involvement in cancer research is a key component in the further development of healthcare infrastructure. PatFoR NCT Berlin actively works to build a network with decision-makers to develop proven concepts of patient integration further and to establish them structurally over the long term.
Would you like to learn more about best-practice examples of patient involvement? Feel free to get in touch with us!
PatFoR NCT Berlin is an independent advisory board within the NCT patient involvement. It does not speak on behalf of the NCT but supports researchers and institutions in integrating the patient perspective more strongly.