Quality of Life

Studying the quality of life (QoL) of patients suffering from rare liver diseases is an important activity of the network.


HRQoL PROM repository

The ERN RARE-LIVER Quality of Life (QoL) working group has created a repository of patient-reported outcome measures (PROMs), that are used in studies conducted by the QoL-group. The repository contains an overview of the PROMs as well as available translations. Where PROMs are available from external sources, the links are given. If they were translated within an ERN-project, the translations are provided for download. Please note, that we make no warranties for the accuracy of the documents – use of the provided translations is at own responsibility. If you use a PROM within a project of the ERN RARE-LIVER that is not yet listed in the repository, please feel free to share it with us.

  1. Open repository: https://webgate.ec.europa.eu/ern/
  2. Login with your EU login (the same one that you use for CPMS), or create a new account
  3. Access the network RARE-LIVER or proceed with “Search & join networks”
  4. Click on “Library” – PROM Database

Overview of Studies on HRQoL (as of August 2022)

Several studies are currently underway in the area of quality of life (QoL) in rare liver diseases: