EORTC QoL RareCancer

Skin tumors, Head and neck tumors
Other dermatological tumors, Merkel cell carcinoma, General
Register and supportive Studies
This projects’ overarching goal is to improve HRQoL measuring practices for individuals with solid rare cancer diagnoses. Due to the diversity of tumours, therapies and patient experiences, it will be hard to develop a single HRQoL score for all rare malignancies. Understanding these variations is crucial when developing an HRQoL measuring technique. Such a measurement strategy will ensure that future research and clinical practice capture the most important outcomes to patients with rare cancer.
In collaboration with the Quality of Life Group of the European Organization for Research on Cancer Treatment (EORTC) and the Netherlands Cancer Institute, we would like to investigate how the health-related quality of life of people with rare cancers can best be assessed. Often there are no specific questionnaires for these diseases that can capture the specific problems well. Internationally, 500 patients will take part in the study. At Dresden University Hospital, we would like to recruit 15 patients as participants.