HEROES-AYA / for patients

Patient participation, an important goal of the “National Decade against Cancer”, is also a central component of our HEROES-AYA project. One of the main goals of cancer research is to improve the quality of life and chances of recovery of affected patients. The participation of sarcoma patients and their representatives adds expertise to the project, as the actual needs of the target group can be included and they are an essential part of the team.

In order to integrate the experiences and information of patients and their relatives directly into the research process, patient representatives and representatives of the German Sarcoma Foundation (https://www.sarkome.de) are involved in the conception and development of the project from the very beginning.

On the one hand, this makes it possible to obtain advice from those directly affected for the overall project, and on the other hand, the experience of those affected can be included from the outset in terms of the opportunities but also limitations of new therapeutic approaches. This target group-specific information provides us with important decision-making aids, e.g. with regard to participation in a clinical trial.

HEROES-AYA thus also marks a turning point in cancer research in Germany, in which scientists, physicians and patients or their representatives work together as real partners. Specifically for the project, an AYA patient focus group has been set up within the German Sarcoma Foundation.

This group will be available for general consultation on patient-relevant topics and will contribute to two specific subprojects by (i) developing information material, consent forms and new educational formats together with the physicians and scientists of the consortium that are accessible and understandable for non-experts, and (ii) by involving them in the design of clinical trials on patient-relevant endpoints.

Furthermore, the communication channels of the German Sarcoma Foundation, the Sarcoma Patient Advocacy Global Network (SPAGN) and the annual Sarcoma Conference will be used to inform the entire sarcoma community about the goals and status of the project and patient-led research in general.

Recruitment for the project is based on two large precision oncology programs at the NCT sites in Dresden and Heidelberg, within the German Consortium for Translational Cancer Research (DKTK) and at the DKFZ: MASTER and INFORM. These are (inter)national registry studies in which children (INFORM) and young adults (MASTER) with advanced cancer are examined molecularly using a standardized procedure. Their aim is to find new starting points for targeted therapies and to create the basis for controlled clinical trials in molecularly defined patient groups.