Update of the EORTC QLQ reference values manual (RefVal)
Project summary
The aim of this project is to update the EORTC Quality of Life Reference Value (RV) manual and to develop a corresponding, dynamic IT infrastructure for managing EORTC RV data (incl. database, web-based interactive software interface and user guideline including recommendation on the use of EORTC QOL RV and on the handling of the online interface): the EORTC QOL Reference Value Calculator. The infrastructure should enable continuous updates and data expansion within the established framework.
Achievements
- Data accrual process (external data holders) simplified
- 19 EORTC and 24 external trials successfully transferred
Data accrual ongoing
Data harmonization is ongoing
Future plans
- Migrate software to EORTC server: Q2 2026
- Already available data sets to be included in the database: Q2-Q3 2026
- Data from 50 000 individuals in the database Q4 2026
Interested in the project or wish to collaborate?
Please contact the PIs (Monika Sztankay: monika.sztankay@i-med.ac.at; Susanne Singer: singers@uni-mainz.de) for more information on the project and possibilities for future collaboration.
We are looking forward to hearing from you!
For patients
Patient-reported outcomes (e.g., data on quality of life) needs to be set into context so everybody can understand it. For this reason, we want to develop an online tool, the EORTC QOL Reference Value Calculator, to compare your data with reference values from specific populations (e.g., from the same age group). Also, we will provide a guidance on how to do this.