Quality of Life

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

Quality of Life workshop on 10 September 2022

The third Quality of Life workshop of ERN-RARE LIVER took place on Saturday, 10 September 2022 in the Radisson Blue Airport Hotel in Hamburg, right after the ERN RARE LIVER members’ meeting. We had 8 presentations on HrQol in several rare liver diseases, including autoimmune hepatitis, vascular liver disease and biliary malformations. Most presentations were focused on quantifying HrQol in rare liver disease, but we also discussed how to identify the most important topics that affect HrQol (unmet clinical needs project in patients) or how to improve HrQol in these patients (social support project). Large steps are taken in the autoimmune liver disease, the main challenge will be how to expand this to the other rare liver diseases and the role of the Qol core group in this process. There were around 25 participants with active discussions. In case you want to see the presentations, please find the link to the protected website here:

  1. Go to 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” – “Meetings” – “Members’ Meeting September 2022” – “QoL Workshop”

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
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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:

  • There are no news at the moment.