Update of the EORTC QLQ reference values manual (RefVal)

Principal investigator(s)
Monika Sztankay
Principal Investigator
Medical University of Innsbruck
Innsbruck, Austria
, Susanne Singer
Principal Investigator
University of Mainz
Mainz, Germany

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 infrastructure should enable continuous updates and data expansion within the established framework.


  • Scoping activities (literature search, contact with potential data providers)
  • Data accrual and planning of IT infrastructure initiated

Future plans

  • Scope statement including defined WP goals and candidate list of variables is being drafted.
  • Stakeholder survey to assess perspective of relevant stakeholder on candidate list of variables and needs with regard to IT infrastructure will be circulated.
  • Start software programming by mid-2023


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 to compare your data with reference values from specific populations (e.g., from the same age group). Also, we want to provide a guidance on how to do this.