Update of the EORTC QLQ reference values manual (RefVal)

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 development of IT infrastructure ongoing

Currents status:

Scoping and data accrual

• Piloting of list of variables and categories
• Stakeholder consultation to assess perspective of relevant stakeholders on IT infrastructure is ongoing
• Establishing legal procedures to allow for data sharing and management
• Data extraction from papers of systematic literature search, creation of database with contact details of
  authors, contacting authors

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!

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.