Update on Health-Related Quality of Life in Solid Rare Cancers Project

The EORTC Quality of Life Group project “Health-related quality of life measurement strategy in solid rare cancers” (003-2022), aims to develop a measurement strategy for Health-related quality of life (HRQoL) assessment for research in solid rare cancers. It seeks to examine how HRQoL is currently measured in clinical research, identify issues rare cancer patients encounter in the healthcare system and report the prevalence of issues within HRQoL by interviewing 500 patients and 150 healthcare professionals.

Until October 2023, the project has had 16 countries involved, with more than 40 participating centres. A real team effort! Several centres have received ethical approval, and the data collection of patients and healthcare providers is going full speed.

While great strides have been made, the work is still ongoing. As the project’s size is huge, we are still seeking collaborators with expertise in specific EURACAN cancer subgroups to collect data and participate in interviews by sharing their expertise.

If you are interested and would like to collaborate, you can contact the study coordinator, Catarina Simões Padilla, directly at c.simoes@nki.nl.

To read the project outline and find out more the selected diagnostic groups, please click here.