Patients have specific knowledge in dealing with their disease and can contribute their own personal perspective.
Research
Basics
In principle, basic research (creates elementary knowledge for further research projects) is distinguished from clinical research (research with/on patients).
Why is research important?
In clinical studies, new active substances are tested on patients in different study phases. The aim is to develop drugs that are superior to the current standard treatment in terms of efficacy and/or tolerability.
How can I be treated in clinical trials?
Both independent research institutions and pharmaceutical companies are constantly developing new drugs that are tested on blood cancer patients in clinical trial protocols. Your haemato-oncologist will tell you whether “trial treatment” is available for you with your condition and whether you qualify for it.
Forschung
We are committed to ensuring that the patient perspective is included in the planning of new medical developments. As an important sparring partner of institutions and companies conducting clinical trials in Switzerland, we want to be informed and involved accordingly when patient-relevant questions arise, e.g., in study design.
Conversely, we can call on our members and patrons internally to participate in certain studies. On our website, we regularly provide information on current and future studies, their interim results, and approvals, so that innovations can be made available to patients as quickly and with as low a threshold as possible.
Patient perspective in studies
Relevance
Patients have specific knowledge in dealing with their disease, can report on their own experiences and contribute their own personal perspective. This is relevant for the principal investigators and can help to ensure that the study design can be optimally planned from the outset.
Fairness
Patients have the same right as other stakeholders to participate in the ethical evaluation of clinical trials. They have specific knowledge in the management of their disease and their own experience, which can help to ensure that a study can be designed in a targeted and effective way.
Equality
Patient participation in ethics assessments contributes to equality: a better understanding of the different needs of patients with specific health problems helps to balance them with the needs of institutions and companies and is a win-win for both sides.
Clarity
Processes involving patients can bring to light hurdles and obstacles that clarify the scope of action for study managers and ethics committees. Direct cooperation between patients and ethics committees promotes practical relevance and realism.