Ethical aspects

We will provide ample information in plain language about the nature of the research, the procedures, but also realistic explanations of the achievable benefits both for individuals and for the patient population as a whole. Independence of the research process from the clinical decision making in our academic clinical centres will also be ensured. We will discuss the clinical studies of the consortium with patient representatives/organisations during the preparation of the ethics protocols and involve patient organisations in the monitoring of the research. The clinical researchers of the consortium have ample experience in joint working with patient organisations.